The Adventures of Lee-Anne
Lee-Anne had early onset Huntington's Disease. I am very proud of the team and the community for empowering Lee-Anne throughout this difficult journey.
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 29 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 to 24/7 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 & 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.
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, prepare food, travel more than short outings, walk unsupported, be home alone, or a variety of other daily tasks. She requires assistance for 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
* Bar Fridge for her personal snacks
24 hour emotional support including at 4:00am when there is a nightmare, fall, or emotional episode
Consider the things a parent would do for a 5 year old child. That's what Team Lee-Anne does for Lee-Anne.
It's impossible to estimate how long this phase will last. With the stability and financial support we've been able to provide 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 our 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
* Adventures and outings
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,
Lee-Anne Peters (1985–2015) was a poet who danced in the space between fantasy and fate. Her imagination allowed her to maintain her sanity and her integrity as the heroine of her own odyssey, knowing her destiny was to lose the battle with Huntington’s Disease. As her quest continued to its inevitable conclusion she created an intimate window into her mythical and vulnerable world, allowing readers to share her journey.
Also, as you may be aware the assisted dying legislation is currently being debated, amended... and eventually to be made into law. There are some issues as it currently stands. Lee-Anne's story is featured today in the St Albert Gazette. Take a read...
They'll be talking about their experiences with Lee-Anne as related to the incoming physician assisted death legislation and what a difference that peace of mind would have given Lee-Anne on her journey.
Sending deepest condolences to your entire team. With the love and commitment you all provided to LeeAnne, you will each have a very big hole in your lives. I realize her passing is bittersweet, as you have watched her suffer over the past few years and must also feel relief that she is now out of pain. I imagine her family has thanked you all for everything you have done for LeeAnne during her illness, and I would like to add my appreciation, as her Mom, Tracy, was my best friend. Take care, and all the best in your futures. Hugs!
Last year I became president of the South Vancouver Island Chapter of the Huntington Society of Canada (HSC). My fiancé, Chris Clayton, passed away five years ago, at age 57, from Huntington disease (HD). Have you had any contact with our chapter? We now have a Facebook group that you can join to see all the activities we have going on... Https://www.facebook.com/groups/285790031618411/