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,