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Updated posted by Erin Kapela 1 month ago
The money has come in to...
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,
Updated posted by Erin Kapela 2 months ago
It's been a while since I...
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.
Updated posted by Erin Kapela 3 months ago
38 people have donated to help...
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.
Created by Erin Kapela on July 4, 2012
Lee-Anne Peters (enthusiastic & courageous 27 year old) has early onset Huntington's Disease. Help extend her independence!
The Adventures of 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.
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 & video2. 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 5 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
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 with her to meetings or appointments in Vancouver or in town
Consider the things a parent would do for a 7 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.
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
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.
Artist Coco Jones has generously donated prints to be given as a Thank You for donations over $300.
We are also considering what other perks we can realistically offer.
I 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.
Thank 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,
Have Questions? Contact the organizer of this campaign now:Contact
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