My friend’s sister has an extremely rare disease and the family needs donations so they can give her the care she needs.
"Liz is living with a very rare disease called Spinocerebellar Ataxia (Type 17). Here’sanother article. She desperately needs a high level of delicate and loving care to meet her daily needs. Living at home with 7 other siblings, it is impossible to offer Liz the undivided attention she requires. Our family has tried tirelessly to keep her at home for the past 7 years, but her needs are growing, and our strength and emotions are waning. In the past few months, Liz has declined to a new level, and it is becoming very apparent we are not able to meet her needs anymore. She frequently cries out in the night in pain, she is unable to keep herself upright, and swallowing has become very difficult.
With the threat and talk of Liz’s government-funded Personal Support Worker (PSW) hours being cut from 35hrs/week to 21hrs/week, we need to find another option. Even with 35hrs/week of support, our family (Liz included) have been barely staying afloat. After desperately reaching out to our government for help asking for relief and better care for her, we have been met with a collection of ministries and organizations saying “Sorry, we can’t help you.” (The Ministry of Health, The Department of Social Services, to name a few, have all rejected our requests to get better care of Liz.). Many friends, family, and strangers have felt a deep desire to help our family in crisis, but we have often responded with a blank stare, not knowing how to receive help, or what kind of help to even ask for. After stumbling across a safe-haven — a 24/7 care facility for young people with severe disabilities, we have found the perfect home for our beautiful Elizabeth. The Sunbeam Lodgeis a family-owned, private home nestled in the trees. It operates with a full set of of staff, nurses, and medical professionals who have a heart for young people in desperate need with rare and unique disabilities.
What We Need
Because the government refuses to help fund Elizabeth’s care at the Sunbeam Lodge we are asking for YOUR help to get her there.
- We would like to get her there for six months, a grand total of $40,488
- All funds will go to paying for Elizabeth to stay at the Sunbeam Lodge for as long as we can keep her there. Our goal is 6 months, but we’d be thrilled to exceed our goal.
In the event that Liz passes away during her stay, the remaining funds will be used to cover her funeral costs and will be saved in anticipation for care for her younger brother who has the same disease as her and is already showing the same severe symptoms Liz did early on.
The difference you can make in Liz’s life, and in our family’s life is incredible, we hardly know where to begin describing the impact it would make.
- Liz would be in the care of nurses and professionals who love her 24/7 (so when she wakes up in the middle of the night with intense pain and cramping, there will be nurses ready to help her!)
- Liz would be surrounded by young individuals just like her
- Liz would feel safe in a home-like setting where she would get her own decorated room, but would receive up-to-date medical care for pain management
- Liz would be able to receive MORE love from our family because the incredible weight and strain of caring for her has been removed from our shoulders and we can devote our energy to giving more love
- The remaining children at home would be able to grow up with more attention and focus from their parents
- The list goes on…
Coming together to raise funds to get Liz to The Sunbeam Lodge will mean that you have helped keep her in a place where her medical, physical, and emotional needs are being met constantly.”
You can find more information and donate here. The family has currently reached 36% of their goal. Even if you can’t donate please reblog this to spread the word. I have seen tumblr raise enough money for a fan made harry potter film so please pull through to give this girl and family an easier life.