Lee-Anne is moved in!!! She moved into her new room 2 weeks ago and has very much enjoyed getting settled in, organizing her favourite books and trinkets and decorating!
Our Favourite Pirate will be hosting her Housewarming/St Paddy's Day Bash next weekend in her new room.
The logistics and details about installing a bathroom are still in the works and may take some time but right now Lee-Anne is very happy in her new space.
THANK YOU everyone for your support and donations.
Lee-Anne's new room!!!
Erin & Lee-Anne on moving day
THANK YOU!!! Please check out the before and after pics of Lee-Anne's new room! (Thanks Jarek for doing the vast majority of the work so far.) Aside from a few small details, we've done everything we can with the renovation money raised!
We're now waiting on Home Depot to see if they are going to be able to help us build an accessible bathroom in this space. A LOCAL NON-PROFIT HAS STEPPED FORWARD TO OFFER SUPPORT and The Super Plumber is on board!
Now we cross our fingers, send up a prayer, and hope that these small miracles for Lee-Anne keep happening. I desire this space be a safe and stable home for Lee-Anne for as long as she is able. With an accessible bathroom of her own that can happen!
Thank you again to everyone who supports us in supporting Lee-Anne. It is truly a community effort in every sense of the word.
(photo credit: Meghan Andrews)
Before & After (so far!)
THANK YOU!!!! To Cowichan Green Community & Rick the Painter for the paint donation. You've saved us precious pennies and we are grateful.
We are seeking a local non-profit that would be willing to partner with The Super Plumber, Home Depot and "Team Lee-Anne" in order to have this space be viable for Lee-Anne in the long-term and install an accessible bathroom.
Home Depot Duncan may be willing to send their "Depot Team" to help complete the renovations AND install a bathroom. Lee-Anne's landlords are plumbers and they have offered equipment and labour.
Thus far the support we have provided for Lee-Anne is as friends helping out, not as a non-profit. In order for Home Depot to commit their resources, the corporate office requires that it be for a non-profit or charity.
Are you a member of or do you know a local non-profit who would be willing to partner with us in this endeavour?
As things go with renovations, costs are higher than anticipated. We're working with Home Depot to see if they can help out but it looks like we would need to be a registered charity or non-profit (much more formal than a bunch of friends helping out)
I'm looking into what our options may be there. Perhaps there is a Huntington's Society we can partner with. I'll be sure to keep you updated on how things go.
In the meantime the flooring has gone in. Check out the "BEFORE" picture!
photo credit: Meghan Andrews
Lee-Anne's new room "BEFORE" photo
Only $590.00 to go!!!! (We've already raised $410.00!!!!)
THANK YOU so much for the donations that have come in. With your kindness we've raised enough money for the drywall, ramp, handles, and shelves. Renovations will be starting in a couple of days.
Please help us spread the word, SHARE, and chip in a few dollars if you're able so we can get the floors, paint, and a few accessories to make it personal and pirate Lee-Anne ready!
Moving Moving Moving!!!
Please help us raise $1000.00!
Things are changing again. As you may know Lee-Anne can be very expressive and enthusiastic in her moods. Emotional outbursts are a standard part Huntington's symptoms and both her ups and downs are immediate and sometimes difficult to subdue. We're happy to do what we can to ensure everyone's living situation is as peaceful as possible.
Turns out that can be a challenge for the upstairs tenants when Lee-Anne giggles until the wee hours or if she becomes frustrated. She can be loud! At the request of their landlords we're renovating the attached studio into a living space for Lee-Anne. As you can tell from the photo "“ it needs some work!
Flooring "“ The current floor is pavement and we've decided to put in colourful interlocking foam mats for safety reasons (and they're fun!) $500.00
A ramp will need to be built from the garage into the house.
Minor safety changes (railings, door handles, smoothing out uneven surfaces, etc)
Drywall and paint "“ to cover exposed insulation and make her room pretty.
An external table for Lee-Anne's air conditioner as the window is too small to support it.
A workspace for Lee-Anne's caregivers: The studio is separate from the main living space and it's important that Lee-Anne's caregivers are close by and available, but not intrusive. A simple workspace will be set up for Jan to sew and Amanda to draw.
Install a 2-piece bathroom (toilet and sink). The studio is a distance from the washroom and we desire Lee-Anne be comfortable and safe.
In general Lee-Anne is doing really well these days. She's been in good spirits and just had a photo shoot done the other day. She's been playing board games, reading books and watching movies.
We are talking to the landlords and there are grants available they can apply for in making changes to accommodate for disabilities. We do desire to make this a very comfortable and inviting space that Lee-Anne will feel is homey and safe.
We're asking for $1000.00 to do the renovation immediately. Please give what you can to help us build her a new room to suit her personality and increasing needs.
Jai & Lee-Anne in the studio
flooring - interlocking mats
Lee-Anne Peters: Personal update
2day was an amazing day with christmas on all our minds! we made tons of snow flakes, listed 2 tunes, watched xmas movies played scrabble & jo And i made pictures!!! manny ppl came by the house so it as more fun gud times it was & thanks 2 Emily Corelli Mattice Brion Fokken CampbellJann Routh MacCormackKailo Mills & Amanda Hodovick 4 makin it hapen...
Lee-Anne is fully into the Festive Spirit! She has been busy collecting new Christmas songs, the louder and funnier the better. She had a delightful day playing in the snow and has been rocking the board game challenges, slaughtering her friends at Scrabble! There's been good music and good times with her family of friends/care-givers.
Her and Jann have been plotting and adventuring Christmasy things and it's been a good month. Lee-Anne's outings have included movies, "cute boy" giggles, outdoor treks, and the occasional breakfast. Everything is well documented with photographs filled with Lee-Anne smiles!
Everyone is doing well right now and we are grateful. The Adventures of Lee-Anne never fail to fill my heart with love, gratitude and the humble awareness of the gift Lee-Anne is in our lives.
We are looking for volunteer practitioners who would be willing to massage Lee-Anne.
Huntington's causes extreme spasms as her muscles are constantly jerking and twitching. As a result Lee-Anne has requested bodywork every second day and that's more than we can manage between the care team.
Sessions must be at her home. We do have a massage table there. Generally between 11am-1pm is her best time.
If you are able to offer your services on a consistent basis we would be immensely grateful. Please help us spread the word!
Lee-Anne Peters Personal Update.
Hey everybudy! i figured i shud update ya'll on my life... so here it goes! Well a cuple of months a go my symptoms of Huntington's Disease changed delightfully (magor sarcasm here), it is normal with the disease. I experience much larger explosions with little frustrations & mmy poor wall is greatly suffering. I avoid reality by escaping into my room through movies & tv. Also i feel a lack of motivation to take time or effort in leaving the house. I still like it when ppl visit i totally love seeing my friends I just cant pop out of the house anymore & see you. I totally love you all and hope you understand the changes in my life. So facebuk or call me 2 & i hope 2 see u all sune
To add to Lee-Anne's update. The concert adventure was both wonderful and challenging, which is why I haven't posted an update on it. Lee-Anne found the travelling VERY difficult physically and by the time she got to the concert she was quite ill. Her body was in very rough shape.
She did meet the band and had photos taken with them but she was physically unable to stay at the concert and chose to go back to the hotel. As she made the decision she was accepting of it and transmuted any disappointment very quickly.
The band Train has offered her free tickets to any other concert they have so we will see if the stars align to make that possible in the future.
As you can tell from Lee-Anne's personal update things have changed significantly. We have just secured additional care funding so that someone is always available to attend to her needs. We are having to adjust to address the motivational factors of Huntington's and schedule and assist with more of her daily routines.
She is not able to travel easily and prefers to stay home. Social situations or crowds are overwhelming for her. She does appreciate visitors 1 or 2 at a time.
The disease certainly has it's challenges and adjustments need to be made as required but Lee-Anne is still the beautiful and inspirational fun-loving pirate we all know and love.
All their bags are packed, they're ready to go! First thing in the morning Miss Lee-Anne and entourage, Jan & Amanda, will be hitting the road for Auburn, WA with mermaid dreams set on TRAIN!!!
We are so grateful to the Crush Management team for providing the concert tickets, and to everyone who donated to cover the expenses to make this dream come true for Our Favourite Pirate!!! (and to Jan and Amanda for being such awesome sidekicks)
Her hair is done. The makeup is packed and Lee-Anne as always is the Beauty in the water, Angel on the beach. Ocean's daughter. Tomorrow she'll be a Mermaid on an adventure!!!
I'm sure Lee-Anne will keep us updated on her adventures via facebook and photos.
Thank you again for every small act of kindness and consideration that helps Lee-Anne enjoy these precious moments. We couldn't do it without you.
6 days until the concert!!!
We got it!!!!
THANK YOU friends. We have raised the funds to send Lee-Anne to see Train in Auburn, WA on August 14!!!!!
She is SOOOO excited!
Crush Management has responded to our request for Lee-Anne to see Train on August 14th in Auburn, WA, with free tickets AND meet and greet passes to meet the band!!!
Lee-Anne has been talking about this concert for months and has made it clear it's her #1 summer priority. Now it's up to us. We are asking for the community to come together again and help raise the funds to cover the transportation and accommodation expenses so Lee-Anne can go on this summer adventure.
Things have been challenging for her lately. Socializing has become rare and her skin sensitivities have her hiding in her room most days. It's adventures like this trip to see Train that keep Lee-Anne positive, not to mention all the afternoons she spends with their music booming through the house.
I am so grateful that we have the opportunity to give her this experience. SO... to make this happen we will need... $550.00 to cover ferry, gas, food, and hotel for the night for Lee-Anne and a side-kick.
If you're up for helping our Favourite Pirate Lee-Anne check off this bucket-list adventure please donate and please share.
Summer is here again!!! I know many of you are wondering how our Favourite Pirate Miss Lee-Anne is doing so here's the update...
As Lee-Anne requires full-time care now, not just support, it's a much different picture from last year. On the positive side as a team we are far more prepared to handle her needs and the team is doing well. Jai and Corelli are enjoying their break from school and Jan working full-time with Lee-Anne is making all the difference in the world. Our day-to-day life is mostly smooth.
However, Huntington's is degenerative and her condition has deteriorated significantly over the past 12 months. One of the big reasons we focused so much on bucket-list adventures last summer was we felt it would be her final summer of independence. We were correct. Lee-Anne tends to stick pretty close to home now and interacts only with people she knows well. She can be found hosting a BBQ in her back yard most evenings or hanging out in her kiddie pool. She maintains her attendance at Medieval Chaos when she can and will occasionally go camping with a close friend.
We are all adjusting to her changing needs. The neurological, behavioural, and emotional progression of her disease can be challenging for everyone involved.
Our Favourite Pirate still has a bright smile on her lips and and eye open for cute boys!
Her focused desire right now is to attend the Train: Mermaids of Alcatraz Tour in Auburn, Washington. Financially we do not have the resources to send her across the border for a concert, and the logistics would be challenging, but we're looking into it.
Her cousin David is also getting married in August and we're all looking forward to that. I'm sure Lee-Anne and her crew will have a fantastic time camping for a wedding weekend!!!
On the financial side, money is tight but we're making it work. We're just able to maintain Lee-Anne's humble life and while there is no extra money everything important is covered at this point.
Much love and gratitude,
The money has come in to pay for care-giving!! The big financial pressure has been removed! We made it! Yay!
THANK YOU for the help and support you've given to Lee-Anne and her caregivers.
Jan and Lee-Anne focus on adventures and fun. Jan is also cooking for Lee-Anne and handling her daily health and basic needs. To Lee-Anne's delight, Jan is a highly skilled seamstress and is able to modify and improve her fantasy outfits as well as hem her pants. Medieval Chaos started up this weekend and Lee-Anne and Jan were both in attendance. Having Jan responsible for much of the daily care is providing a great deal of support for Jai and Corelli.
It's hard to believe it's been 9 months since we started fundraising and called out for community help. In many ways we've been able to maintain stability for Lee-Anne beyond what we thought was possible. But Huntington's Disease is progressive and Lee-Anne's health, emotional and mental state have deteriorated dramatically over the past year and will continue to do so.
I've come to appreciate how special it is to be able to design such a personalized care program that takes Lee-Anne's desires and personality into account on all matters. I'm deeply grateful to be a part of this endeavour and process.
Thank you for your support. At this point donations will be utilized to maximize Lee-Anne's quality of life; movie nights, new books to read, and entertainment. We will see how things go and I will be sure to keep you up to date as things progress.
With heartfelt appreciation and gratitude,
It's been a while since I updated you on Lee-Anne's adventures so let's get the most important stuff out of the way. The government funding has been approved but it's still in processing and thus far all expenses for both care and living expenses have been paid out of donation money. The bank is empty.
Jai and Corelli VOLUNTEERED countless hours (3,840 hours would be my guess) over the past year ensuring that Lee-Anne was cared for and they are continuing to provide the overnight home support. With Lee-Anne's current needs we've shifted much of the daily care to Jan (the fabulous care-giver we hired) and Jan has been extraordinary with the fluctuating hours, and last minute schedule changes as we all adjust to this new phase of care.
That said, we do need to pay Jan!! Please share, please give or give again if you're able. Tell your friends and spread the word. We've scraped by thus far but we do need help to make it through this month.
As for Lee-Anne, it's been a challenging patch. While she's grateful for the help she's struggling with the loss of independence and we're finding ways to have the care-giving feel as natural and non-invasive as possible. She's been off with friends for much of the past week and that's given everyone a much needed break in this transition time, especially Lee-Anne.
We operate under the mandate that there's always a positive solution. Social butterfly Lee-Anne has been focusing her energy on parties and events. Having something to look forward to is key in maintaining her positivity and we have started to schedule entertainment for her, movie nights, swimming pool, and adventures with friends. Much of it she still creates herself. She just hosted a gathering to celebrate her cousin's wedding. She's been rocking Musical Bingo weekly and she had a fabulous Mardi Gras party a few weeks ago.
Thank you again for your ongoing support. We count on community to empower us to care for Lee-Anne.
Please Share. Please Give.
38 people have donated to help bridge the funding gap in Lee-Anne's care!!!
This transition time is an adjustment for everyone, especially Lee-Anne. Yet she never fails to amaze me with her focus on gratitude, joy, and acceptance.
But like anyone some days are easier than others. Lee-Anne had a rough week. She fell on Friday and skinned her knee pretty badly. She's having a hard time sleeping and she is losing the ability to understand mid-term cause and effect of her choices and actions. It's been sometime since she was able to handle long-term planning but this is a significant decrease in her capacity to function independently.
By mid-term I mean that if she buys new clothes she no longer understands how that would relate at all to being able to go to a movie in a week. As a care team we have had to start closely managing almost all aspects of her daily decisions. This loss of autonomy is hard for her.
While she's very grateful to not have to expend the mental energy trying to manage finances, scheduling, food, and activities some of the restrictions placed don't always make sense to her with her current level of understanding (Like why she can't make noise at 3am)
In true Lee-Anne fashion she eternally finds pleasure in the simple things, lets go of whatever she can't control, and focuses on the positive. Her solution to an upsetting week is to have a Mardi Gras party this weekend!
Lee-Anne has also started swimming regularly, she's off to a movie tonight, and she just got a new book!
Thank you for caring about the Adventures of Lee-Anne and for being willing to support us in supporting her.
Please help us spread the word to find 62 more people to donate $32/month for 3 months.
Much love and gratitude.
We have hired a care-worker who starts TOMORROW!!!
So far 24 people have donated $32.00 (or more) to help us pay for care for Lee-Anne.
PLEASE SHARE, spread the word and talk to your friends/family/colleagues!!
We're looking for 76 more people to donate $32/month for 3 months so we are able to pay for home-care for Lee-Anne.
The care-worker's name is Jann. She's experienced, up for any challenge, and has a fantastic perspective for Person Centred Care that respects Lee-Anne's lifestyle and desires.
Lee-Anne likes her very much and they are both keen for adventuring, laughing, and I'm sure finding a bit of trouble to get into (while ensuring that Lee-Anne is fed yummy comfort food safely, without choking)
The paperwork for funding has all been signed, submitted and is in processing and we are all feeling grateful and relieved. Things are on track but we do need more community support to make it through this transition time.
PLEASE SHARE LEE-ANNE'S STORY
I am so grateful we have the care & support team in place that we do for Lee-Anne. She is surrounded by people who love and respect her and it's a beautiful example of what community can do to create Person Centred Care with the right intentions and light-hearted commitment.
I sometimes wonder how we do it. I wonder how Lee-Anne stays totally focused on laughter and fun. I wonder how Corelli and Jai handle their responsibilities and constantly fluctuating schedules around Lee-Anne's changing needs. I wonder how I'm able to manage the admin, finances, fundraising, and counselling, while supporting Lee-Anne, Corelli and Jai.
Then I remember how we do it... We don't think. We don't try to count the hours. We stay in the moment, supporting and loving each other and tackle the challenges when they arise. We laugh and we laugh, and when Lee-Anne's disease reminds us of how cruel it is, we find more laughter and beauty. We stay heart-burstingly grateful for all of the support that empowers us to do what we do.
We are thankful for existence today. We are grateful for where our lives are, at/in this moment.
New story in the Cowichan Valley Citizen
We had a very positive and productive meeting with the case worker today regarding funding for Lee-Anne's care. They agree that she certainly qualifies for the CSIL program and are helping us fast-track the paperwork as much as possible. Yay!! That will allow us to hire our own support workers and set hours that work with Lee-Anne's needs.
We also have spoken with a woman who shares Lee-Anne's exuberance and inspirational outlook about working with Lee-Anne and my sense is that it will work out well for everyone involved. We're all very excited to be able to relax with some additional help and peace of mind while we're at work.
So far 19 people have donated $32.00 (or more) to help us hire a care-worker immediately. Only 81 more people to go!!! Our desire is to have someone hired and working by next week.
Please Share, email your friends and help us get the word out.
We are all grateful!
~Erin, Corelli, Jai & Lee-Anne.
IMPORTANT UPDATE. PLEASE READ. We need help.
We are asking for 100 people to donate $32.00/month for 3 months so we can hire a care worker IMMEDIATELY. If you are able to help we would be deeply grateful.
The community of friends is giving a lot and with the need for full-time care we understand that it's time to hire help. We're in the process of jumping through the funding hoops, referrals and meetings but that may take weeks or months to get in place.
As you may know from the previous update Lee-Anne's care needs have increased a lot recently and we have no more time to give.
Updates on Lee-Anne Peters...
As you know we assembled a team of friends who provide care and support for Lee-Anne, and that has been going well for the past year. Until recently Lee-Anne was able to be alone for 3-4 hours at a time. Unfortunately her disease has progressed. She requires constant care and can no longer be alone to eat. Lee-Anne is high risk for pneumonia, often coughs until she vomits, and now must eat very small meals frequently throughout the day to reduce the choking risk. That means someone has to be home with her at all times. Remember both Corelli and Jai are full-time university students and volunteer to care for Lee-Anne. They can't be there all the time.
As friends/care-givers we have set up a comfortable and functioning home for her that enables her to maintain a level of independence and enjoy life. It works well for her and allows her to be herself in a safe and loving environment. Our goal is to be able to maintain her quality of life as she desires for as long as possible.
She is on disability but we rely on community donations to ensure that basic needs are met. Without ongoing donations we do not have the funds to maintain basic living. Lee-Anne also requires a specialized diet (and that adds to the monthly bills)
We just had an assessment done by the Occupational Therapist who really got a good grasp of the situation, however there is nothing she can provide beyond a bath grip bar. We have already naturally made all of the recommended adaptations to minimize risk and Lee-Anne naturally adjusts as her condition deteriorates.
The OT is putting in a referral for a case manager but the medical hoop jumping is suggesting that her options are to move into home based care with a different family, assisted living, or have community nurses come in (but we can't choose them and they would be different and only available for a max of 4 hours/day) None of those options will work for us.
Lee-Anne needs 40hrs/week of home support for meal supervision, food prep, and assistance with basic tasks. We are dealing with a significant choking hazard now and it's not safe for her to eat alone anymore. With the mental and emotional side it's essential to have consistency in her care, with people she knows and is comfortable with. Home & Community Care can't provide that. We are doing everything we can with referrals and meetings and paperwork to find the right programs and funding for her. But that takes time too, and it's a struggle.
This is a challenging transition time and we are deeply grateful for all the support and donations that make it possible for us to care for our favourite pirate Lee-Anne.
From Lee-Anne Peters:
I would just like to say thank you to all the people in duncan who know what I'm going threw & how everyone I meet takes a step up to help me get through the day. I can see it in the simple kindness of all of you out there so thank you all foor all the little things you do...
Check out Lee-Anne's new hairdo!!! She was finding the hair at the back of her head to itchy to sleep or relax (side effect of her nerve endings being so hypersensitive and raw) so she found the perfect solution - a fantastic mohawk to keep all of her hair out of the way, and looking fabulous!
SUCCESS: Lee-Anne's cousin was kind enough to buy her a new camera so she's back documenting all of her adventures!
We're looking for homemade canned fruit for Lee-Anne to eat as it's softer and easier for her to eat.
Happy New Year and welcome to 2013. Thank you for the support and caring you have shown Lee-Anne and her care-givers in 2012.
On some level many of us have been surprised and grateful that Lee-Anne is still with us and doing as well as she is. That said her health has decreased again and swallowing is now a significant issue and she is at risk of choking. This is a common and severe symptom of Huntington's.
We are at the point now where Lee-Anne is requiring full supervision and assistance for all meals and snacks. We are looking into home-care assistance but it may take some time to set up and get funding in place. In the meantime we are asking for community help to support Jai and Corelli, especially during Lee-Anne's meal times when they are at work or school.
Food is also posing a challenge as what she is able to swallow is unreliable and changes often. We are doing what we can figuring out groceries and meals that she is able to eat. We are open to suggestions and will be discussing with Lee-Anne what she is most comfortable eating right now.
Lee-Anne is spending the holiday with her cousins and is well into the festive spirit. We painted her arms with holiday henna, sang carols, enjoyed a fantastic day of tree decorating last week and true to form Lee-Anne can be counted on to lead the way to the best Christmas parties!!!
The Vegas Trip has been postponed for now as we simply don't have the funds to send her and there are a few health concerns that will need solutions first. The simple story is that eating can be a challenge for Lee-Anne and we'll need a functional game plan for Vegas to be fun and safe for her.
Thank you again for the support you have shown. We are deeply grateful. Please share and help us keep Lee-Anne's story alive and in the minds and hearts of the community as we do rely on community support to continue caring for Lee-Anne.
From our family to yours, Happy Christmas, and thank you for making all of this possible.
~Erin, Lee-Anne, Corelli & Jai.
Lee-Anne has gone to get her passport this afternoon as we're aiming to send her to Las Vegas just after New Years to cross another adventure off the bucket list. She would be going with one of her oldest friends from Alberta that she doesn't see very often.
In order to make this happen and still ensure that her basic needs are met we need to raise an additional $700 within the next 10 days.
Please help us help Lee-Anne to fulfill her dreams. She is so very excited and is talking non-stop about possible Vegas adventures!
A great story from Shaw TV on life with our favourite celebrity Lee-Anne! Check it out, spread the word, share the love.
First of all THANK YOU for the support you've shown Lee-Anne. I wanted to take a few minutes to send you an update. It's been close to 6 months since we started fundraising for her and I wanted to share with you what a difference it has made and how significantly every dollar has changed her reality.
6 months ago Lee-Anne was going downhill fast. She was overwhelmed and lost and very much afraid of what would happen to her. She was no longer able to make it up the stairs to her room and had fallen down the stairs a couple times. It was hazardous to leave Lee-Anne home alone, especially in the kitchen. Lee-Anne was struggling with with the noise and energy of having 6 year old Josefine in the house. Jai and Corelli were stressed and heartbroken because they didn't have the resources to care for her anymore. They were all at the end of their rope.
Disability had suggested that Lee-Anne move into an apartment by herself and they would provide funding for care-givers stop in during the day. Seeing no other option they all agreed. That lasted one night, before Lee-Anne ran back to Jai and Corelli's at 4:00am freaking out. It became obvious that there was no way she could be on her own. It was at that point that we rallied to find another solution, moved their young family into a ground-level basement suite and started fundraising. The summer heat was very hard for Lee-Anne as her body no longer regulates temperature and she felt as though her blood was boiling, but we found solutions. The air conditioner cooled her bedroom to refrigeration temperature and also created white noise that made her room peaceful and isolated from the rest of the busy household.
Now, 6 months later Lee-Anne is stable. She's celebrated her 27th Birthday. She's crossed other adventures off her bucket list and will forever cherish her time in Tofino. Jai and Corelli have created a calm home that easily flows with Lee-Anne's needs. Her friends have stepped up to run errands and check in on her when Jai or Corelli are unavailable. The seasons have changed and Lee-Anne is able to be out of the house comfortably. She's relaxed into asking for help and knows that this close-knit group of friends will ensure that her needs are met and that she doesn't have to worry about money, food, or security. It's allowing her to focus on managing her symptoms, her heart's desires, and enjoying more bucket list adventures.
In fact, by removing the worries and stresses of who will care for her, how will she manage, will she be able to make ends meet, Lee-Anne's mental and emotional state has stabilized to a comfortable degree. She's adjusted to full-time support with grace and is focused on joy and friendships. At this rate it's impossible to predict how long this phase could last. With all the community help we've created a good environment that allows Lee-Anne to maintain her independence and stabilize her health, for now. THANK YOU!!
What that also means is that we have more fundraising to do. While the routine is going well and Lee-Anne is her bubbly grateful self, the bank account is dwindling. If you're able, please consider giving again. Also please help us spread the word and share her heart-warming story. CBC Radio did a very touching story about Lee-Anne that you can listen to at http://www.cbc.ca/allpointswest/2012/11/09/lee-ann-peters-birthday-party/
Again, here is the link to the fundraising page. http://www.gofundme.com/summerofLeeAnne
Catherine over at CBC submitted the piece on Lee-Anne to CBC's national documentary show, In
We just found out it has been accepted, and will run across the country tomorrow at 1 pm and again on Sunday at 7 pm.
Check it out! Spread the word. I feel the fundraising energy picking up again and my desire is that we can reach a ton more people who are touched by Lee-Anne's story and are able to help her check a few things off her bucket list, and more importantly help us meet her basic needs and maintain a humble but comfortable quality of life.
With love & gratitude,
SHAW TV will be airing a story about Lee-Anne Tomorrow. It will be on Channel 4 all the way from Victoria to Chemainus. It will run periodically throughout the day at various times. Check it out!!
Here's the repaired link for the CBC Radio interview with Lee-Anne Peters and friends. Hear a few words from her father, her closest friends, and catch a snap-shot from her fabulous birthday party.
Please check it out and share her story!! As always we are grateful for your support, donations and help. Huge thank you to Catherine at CBC for really getting to the heart of Lee-Anne's story.
Lee-Anne on CBC RADIO Victoria.
CBC Radio has been following Lee-Anne's story since we went to Tofino and will be broadcasting the followup story today at 5:50pm! Tune in & share!!
Our next fundraising goal (aside from the ongoing living expenses) is for Lee-Anne to cross Las Vegas off of her bucket list. She's hoping to celebrate the New Year in Nevada with one of her closest friends.
Please share, donate what you can, and please help spread the word again so we can help this inspirational young woman experience her life on her terms.
CBC Radio 90.5FM
Lee-Anne's Ultimate Birthday Bash was a grand success!! We had roughly 60 people partying it up with the delightfully excited (and HOT) Lee-Anne!
Lee-Anne danced the night away and only rarely left the front row. The bands were all fantastic and fun and everyone had a great time.
HUGE thank you to all of Lee-Anne's friends and her Dad, who all made special effort to go above & beyond to make this night one to remember, not only for Lee-Anne but for everyone who loves her.
Lee-Anne's message is... I had the best time ever last nite rockin out with all of you! thanks a lot for us commin out to support me & my birrthday!!!"
We also raised a good chunk of change for Lee-Anne's care in the upcoming months. THANK YOU!!!
GRAND PARTY FUNDRAISING TOTAL: $1,348.00
Lee-Anne's Birthday Party is TOMORROW!!! Everyone is welcome. It is a fundraiser. Door is by donation, in fact everything is by donation! Come join our favourite Pirate Lee-Anne as she parties the night away with all who love her.
We have a fantastic lineup of bands playing and a whole lot of celebration and love to share. Lee-Anne is super excited!
6:00pm at Vimy Hall (3968 Gibbins Rd, Duncan). Children are welcome.
Designated Drivers will be available to ensure people get home safe at the end of the night.
All funds raised will go towards Lee-Anne's care.
Only a couple days until Lee-Anne's Party! I'm confident it will be a fantastic evening of music and celebration. I'm also desiring that it be a good fundraiser. The bank is dwindling and Lee-Anne needs more support. Please help spread the word and share her story.
It's getting harder for Lee-Anne to do things she enjoys as her Huntington's is progressing quickly. People have asked how it's going. Overall it's amazing and Lee-Anne is a delight. However Lee-Anne is experiences a consistent sacrifice of pieces of herself and going through the process of letting things go.
As her friends and care-givers much of our focus is on doing small things to minimize the loss. This week she can no longer wear her rings or jewelry so I'm looking into henna body art to paint her hands so she still feels pretty. Little things like that.
(One week until the BIG BIRTHDAY BASH)
From Lee-Anne Peters
well 2nites hte nite i have 2 remeber my nepew taken from us so long ago...
as hard it is i will never forget this past summer..
tofino & boating it up & staying in the sickest cbains
plannning my will & makin so many perfect things to give ppl
makes me so happy to see there faces when they get them
yet at times i fall into tears at all the things I have to give up...
i've had amazing morningigs spent dreaming about snowboarders
& fun times at MC & and all u gus have dun 2 make it easier 4 me!
hangin in kkaties pool...
& realizing that i have become my mothers swedishh
roots by my typing skills... you see the sewds like extra
& havin the CBC fols here the other day... she was amazed at us...
she thought aour place wud b depreesing...
but all of us were alughin so much even thouegh
i now it will hurt my freinds wen i leave they
still laugh with me till the end...
& i know who the true amily our in my life...
they are all around me ever since i camme 2 bc...
soo many ppl invited me into yout lives I am sooo
thankful to you all & this past summer I am soooo
stoked 2 have the support i needed...
radome ppl have been incredible...
& thew only hard part has been how my own family
has been less aware of what I've been threw..
AllI can say is i know who will be there to the end...my freinds
that are my true family...
& maggir i give a shout to u & contunuing my tradtion
4 cado wen I'm gone...
and to everyone out there I want u 2 no that
I wud b lost without u..
thank you :)
from Lee-Anne the blessed
Arr! · · Cast Overboard
SUCCESS!! A dining room table and chairs have been donated by the lovely Kayla.
We've raised $4,123.00! That's amazing. The funds raised here are what has kept Lee-Anne comfortable and fed over the past couple of months. BUT the bank is dwindling. Please help by sharing her story and spreading the word. We currently do NOT have enough in the bank to get Lee-Anne through until Christmas.
Much love & Gratitude
We're looking for a dining room table for Lee-Anne, Jai, Corelli & Josefine! Eating on the floor or at the coffee table just isn't working.
by Lee-Anne Peters on Thursday, September 13, 2012 at 8:20pm
I'm sooo sorry josafine...
I never wanted to hurt you or say good bye &
hearing you today on the trampoline with your friend
and saying be careful she has huntingtons...
so be nice to me...
just destroyed me inside.
then you asked me if i would have it forever....
I felt myself all those yrs ago when i was your age
and didnt understand why my mom had to go..
you even loook like a mini me which it makes it even harder
I only hope that one day you'll understand why I had to leave you
and the memories we once had...
And no that I loved you threw those days of past.
I want ou to know i was there on the day of your birth and
when you were in the hospital
I want you to now that i prayed for you and that you'd be safe.
I want you to know that even if oyu've drivven me nuts
I'lll always love you to the end.
So I want you to grow old, marry and love..
to the greatest of yuor abilities... for what I
couldnt have here on earth
I think you should
so go on laughing until the end
until one day we'll meet aqgain...
I'll be ever waqtchful
Lee-Anne just finished an incredible bucket list summer, knowing it was her final opportunity to enjoy many activities with her friends. Not a moment was wasted. A local business owner and the Long Beach Lodge Resort made it possible for Lee-Anne to go Tofino and for that we are incredibly grateful. You can check out her adventures at http://youtu.be/pxRgylume-M
It was a dream come true for her. Community members rallied to provide extra support so Lee-Anne was able to continue attending her favourite activities such as Medieval Chaos (a live action role-play game), a country music festival, and musical bingo. At the heart of it Lee-Anne is a fun-loving and hilarious young woman with an active imagination who knows how to have a good time!
Her disease has progressed to the point that she no longer has the ability to do most of the things she values. It's with remarkable acceptance that she's letting go of her social life and spending limited time only with those closest to her. She used to hang out in the river and soak up the island life and walk to any destination. Even at the beginning of the summer she was capable of going out with friends on a regular basis, and did so. As of September she can handle one outing per week.
Huntington's disease causes angry outbursts and the loss of control over emotions. Lee-Anne's innate kindness prevents her from socializing unless she is emotionally and mentally prepared to contain her reactions. Her light-hearted laughter and humour is core to who she is and allows Lee-Anne to stabilize by focusing on the hilarity of everything but she finds unfamiliar environments and high-energy situations overwhelming now. She's firm in her resolve to protect unsuspecting people from her Huntington's related temper. She has always enjoyed friends and parties however, most of her time now she spends isolated in her bedroom, reading or playing on the computer.
Lee-Anne's 27th Birthday Bash. She's no longer able to travel or adventure as she liked but Lee-Anne desires to have her birthday in October be a giant, music-filled celebration with her favourite local bands and all of her friends. A party to remember for sure. Expenses will include hall rental, band transportation, production gear, insurance, bar costs, food and decor. Estimated cost of the party is $2,500.00. All help is appreciated!
I've updated the fundraising page and with it now being September I'll be refocusing my fundraising efforts to ensure the common months are as stress-free as possible and Lee-Anne's needs are met. Thank you for your contributions thus far. If you are able, please consider donating again. ALL help sharing her story and spreading the word is greatly appreciated.
Here's the link! http://www.gofundme.com/summerofLeeAnne
YouTube GIGGLES with Lee-Anne
We've been busy with summer life these past couple of weeks but it's time to get back to the fundraising! Lee-Anne and her roommates are going to require more assistance to get through the coming months. Money is tight and while Lee-Anne has been able to enjoy a few outings to Sunfest and Medieval Chaos we're still looking for basic necessities such as a upright freezer. Please continue to spread the word and share Lee-Anne's story.
Videos from Tofino are also posted!! Enjoy.
Much love & gratitude,
Check out her Day 1 of Lee-Anne's adventures in Tofino with her roommate & caregiver Corelli! (more video to come)
We are extraordinarily grateful for the community support that has been demonstrated over these past few weeks. What has become piercingly apparent this week is that the commitment Jai and Corelli have taken on is going to cost a lot more than $3,000.
Lee-Anne's increasing care needs combined with the increased cost of living in their new home have this young couple still scrambling for solutions to make ends meet for more than a month.
We're going back to the community to ask for more help. Please help spread the word, tell your friends, share their story. At this point Jai and Corelli are counting on student loan debt to get their young family through the fall. I desire we remove this burden and allow them the mental and emotional space to focus on caring for Lee-Anne with open hearts and the energy to dedicate to her needs and desires.
Lee-Anne Update: GUESS WHAT GUESS WHAT GUESS WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The liquor store is giving me tickets for Sunfest!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Great News!! We've reached our original humble goal of $3,333.00. That means Lee-Anne, Jai, & Corelli will be able to eat. To be clear, we've now raised JUST enough for them to survive on over the next few months without them (hopefully) going into more debt. Any trips, adventures, fun items, or bucket list wishes will be ON TOP of what has already been raised.
Please continue to share the link and spread the love. Let's make this really a summer to celebrate!!!!!
Here's the podcast of Lee-Anne & friends on CBC radio yesterday!! Please share.
CBC Radio One All Points West Wednesday July 18, 2012
Friends and caregivers of Lee-Anne Peters, Erin Kapela and Corelli Mattice, talk about their fundraising campaign "The Last Summer of Lee-Anne."
Lee-Anne update: HEY WORLD!!!!!! I'M BACK FROM TOFINO!!! GOOD TIMES!!!!!!!!!!
Lee-Anne is IN Tofino. Lee-Anne is soaking in the "cold" tub complete with all the jets on & we just got back from a fantastic boat ride!! She's very happy. We're all grateful. Check out the photo of her & Corelli splashing in the surf!
Lee-Anne update: IS GOING TO TOFINO!!!!!!!! WOOOOOOO!!!!!!!!!!!!!!!!!!!!!!
Meet the care-givers, Jai & Corelli! These are the fabulous folk who have committed to caring for Lee-Anne. Check out the video and learn a bit for about this compassionate and down-to-earth couple.
BIG squishy lovey hugs to Kailo & Tara for consistently being #1 backup & superfriend to Lee-Anne. Long before this fundraising started Kailo & Tara have been hosting Lee-Anne for dinners, outings & weekends making it possible for everyone involved to get this far. THANK YOU!!!!!!!!!!!!!!! (I added extra !! for Lee-Anne)
WOW!! AMAZING NEWS!!! A very kind member of the community in Duncan has arranged for an all expenses paid trip to Tofino for Lee-Anne & her escorts this weekend AND the Long Beach Resort has generously donated 3 nights stay, a boat ride & they're setting the hot tub on cold for Lee-Anne!! HUGE THANK YOU!!! Lee-Anne is super excited & squealing with glee. We are grateful.
Air Conditioner! Lee-Anne's friends Brian & Alexus have gotten an AC unit for Lee-Anne's room. That will help keep her bedroom cozy as a walk-in cooler. THANK YOU!!
Wow! The response has been incredible. Corelli has cried and Lee-Anne has giggled with amazement. The community support is allowing Lee-Anne to dream about what she DESIRES to do this summer above and beyond eating decent food and not melting from the heat.
Jai & Lee-Anne rocking out
waiting in anticipation of her favourite shepherd's pie!
Hanging with Kailo
care-givers Jai & Corelli. Jai taking a break from walking
Lee-Anne Peters (enthusiastic & courageous 27 year old) has early onset Huntington's Disease. Help extend her independence! The Adventures of Lee-Anne
Lee-Anne Peters is quite simply the strongest woman I have ever met. Lee-Anne has early onset Huntington's Disease, a genetic degenerative condition that is eroding her emotional, physical, and mental being. At 27 years
old her condition has already deteriorated significantly and she is now in advanced stage Huntington's Disease. She will continue to lose her ability to function mentally as an adult, her emotional control, and her ability to walk, swallow food, dress and care for herself. Lee-Anne's care needs have increased a lot in the past year and we are grateful to have such a dedicated team of care-givers/friends to provide her with the quality of life she desires.
Unfortunately her disease has progressed. She requires constant care and can no longer be alone to eat. Lee-Anne is high risk for pneumonia, often coughs until she vomits, and now must eat very small meals frequently throughout the day to reduce the choking risk. That means someone has to be home with her at all times.
Lee-Anne also requires a specialized diet (and that adds to the monthly bills). This is a challenging transition time and we are deeply grateful for all the support and donations that make it possible for us to care for our favourite pirate Lee-Anne.
It's Lee-Anne's strongest desire to be self-determining and she is resolute in valuing quality of life over quantity. She's been determined to cram as much life as possible into the short time she's been given. In the past few years she's been skydiving, naked bungy jumping, chased cute boys in medieval garb, travelled extensively, chased cute snowboarding boys, chased cute musicians, gone camping at every opportunity, and giggles joyfully at every chance.
We are very grateful to have been able to provide Lee-Anne with the adventures she desires and the memories she cherishes. At this point Lee-Anne is fully dependent on her care team and very close circle of friends. Social activities are primarily limited to at home and small doses, with close friends.
Her 27th Birthday party was a lively celebration with 60 of her closest friends and musicians dancing the night away! Check out the story on CBC Radio
Lee-Anne had an incredible bucket list summer! Not a moment was wasted. A local business owner and the Long Beach Lodge Resort made it possible for Lee-Anne to go Tofino and for that we are incredibly grateful. You can check out her adventures in video1
. Community members rallied to provide extra support so Lee-Anne was able to continue attending her favourite activities such as Medieval Chaos (a live action role-play game), a country music festival, and musical bingo. At the heart of it Lee-Anne is a fun-loving and hilarious young woman with an active imagination who knows how to have a good time!
Huntington's disease causes angry outbursts and the loss of control over emotions. Lee-Anne's innate kindness prevents her from socializing unless she is emotionally and mentally prepared to contain her reactions. Her light-hearted laughter and humour is core to who she is and allows Lee-Anne to stabilize by focusing on the hilarity of everything but she finds unfamiliar environments and high-energy situations overwhelming now. She's firm in her resolve to protect unsuspecting people from her disease related temper. She has always enjoyed friends and parties however, most of her time now she spends isolated in her bedroom, reading or playing on the computer.
Her friends, Jai and Corelli, are continuing to provide live-in support for Lee-Anne but are no longer able to cover all of her needs on their own. Their patience and sense of humour allows them all to move through with grace.
I've known Lee-Anne for 7 years and consider Jai and Corelli to be good friends. Jai and Corelli are a young couple in university. I have the utmost respect for the task they have volunteered to take on and I desire to see them supported in their effort. In order to fulfill Lee-Anne's desires for her life, her care-givers need support.
There is no cure and no treatment to stop the disease progression. It effects all aspects of Lee-Anne's life: behaviour, memory, personality, mobility, moods, her independence, and quality of life. Lee-Anne is unique in that she has very early onset and started showing symptoms in her late teens. Most people don't show symptoms until their 40's.
Fully aware of the reality of what her life and death would look like, Lee-Anne moved to acceptance and surrendered the idea of children or a long-term relationship when she was in her early 20's. Lee-Anne has taught me much about Forgiveness/Acceptance/Letting Go in the 6 years I've known her and she is a truly authentic and beautiful spirit. She lives every single day in the moment, with gratitude and a determined focus on the positive. She appreciates the simple everyday miracles of life, laughter, and friendship and has built herself a support network of people who can't help but love her.
Lee-Anne is no longer able to: manage stairs safely, travel on her own, be home alone for more than three hours, deal with healthcare professionals on her own, prepare food, grocery shop, clean, carry items heavier than 5 lbs, or a variety of other daily tasks. Basic self-care and hygiene requires her to rally her emotional and mental resolve in order to maintain her independence and it often exhausts and frustrates her. Her family is out of province and that means it's up to her friends in Duncan to shoulder the majority of the day-to-day care.
As her friends we have increased our support system to ensure that we can maintain care. I head up the organizing/fundraising side of things, while other people have offered to help with errands, or escort Lee-Anne on her weekly outings.
As a direct result of your donations we have been able to provide...
* Camera for Lee-Anne
* Dining room table
* Concert Adventure to see Train
* Home Renovations to create a new room for Lee-Anne
Over the past year the level of support Jai & Corelli have been doing has increased significantly. It includes:
All of the bill payments
House maintaining & cleaning
24 hour emotional support including at 4:00am when there is a nightmare, or mental or emotional episode
Mediating and dealing with Social Services and government programs that Lee-Anne is involved with
Attending all meetings with health or government people and handling all of the paperwork
Going in her place to meetings or appointments
Consider the things a parent would do for a 5 year old child. That's what Jai & Corelli do for Lee-Anne.
The move increased their cost of living and neither Jai nor Corelli have an abundance of funds as full-time university students. They require additional financial help to be able to manage everything.
It's impossible to estimate how long this phase will last. With the stability and financial support we've been able to provide in the past 6 months Lee-Anne has been doing well. Stress causes the disease to progress more rapidly, especially if she gets overwhelmed. Having her friends rally and provide consistent backup and support has enabled her to relax, adjust to the changes with grace and focus on her heart's desires.
Once her disease progresses again she will no longer be able to maintain her independence, privacy, or quality of life as she values it.
What We Need... We are raising funds to empower her friends to extend this phase as long as possible. I don't desire concern over bill payments or living costs to become a factor in Jai and Corelli's ability to support Lee-Anne. Focusing on the positive we're doing everything we can to extend friend-supported care.
Funds raised are utilized for:
Housing, food, and cost of living
Home-care safety products and equipment
Home-care What You Get
All contributors will receive a heartful thank you and updates on the Adventures of Lee-Anne. I have no doubt that you will fall in love with her exuberant adventures and will, like us, root for every additional week of life she is able to enjoy.
The ImpactI see this as an extraordinary example of the power of community coming together. Lee-Anne is not blood family; it's FRIENDS, determined to respect her desires that volunteer to care for her. Her desire is to remain on the island and her family is out of province. Lee-Anne has a gift for touching people's hearts and inspiring them to rise to their highest. She keeps us in the moment and in gratitude. Your gift will ease the pressure on Jai and Corelli and help Lee-Anne maintain her independence a little while longer.
Other Ways You Can HelpThank you for helping us help Lee-Anne. Your support is deeply appreciated. Please help spread the word and share her story. Make some noise and send some love.
Love & Light,