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They say it takes a village to raise a child. What if that child was sick? What if their sibling was also sick? What if their illness had no cure? How would the village help this family? I am hoping we can. My best friend faces a dark, sad reality every day. She is the kind of person that would never ask for help, so I will. A year and a half ago, her life went from a normal everyday life, doing all the things that most of us unknowingly take for granted, to spending hours on end, researching symptoms to figure out what was happening to her little girl. Layne who once was extremely active had become bedridden, then looked "normal" days later.  Her now 12 year old daughter, Layne, has been told she has Ehlers Danlos Syndrome 3, a rare disease. Layne has also been said to have a Dysautonomia - Postural Orthostatic Tachycardia Syndrome (POTS for short) 
There is no curative treatment for Ehlers Danlos Syndrome, so management is supportive at best. Ehlers Danlos Syndrome (EDS for short) is caused by a genetic mutation. EDS is a connective tissue disorder that causes the collagen in the body to be faulty. It can cause chronic pain and cause the joints to dislocate or subluxate sometimes daily. It can effect the entire digestive tract, heart, and other organs. Layne lives each day in chronic pain, some days severe. She has subluxated over 10 different joints, more times than her mom can remember. A simple roll in her bed can often cause her shoulder blade to subluxate. She has just been prescribed nerve blockers to try to stop some of the pain. A once extremely active child, now unable to participate, just sits on the sidelines and watches.  Last year Layne's dizziness, from her skyrocketing heart, had left her bed bound and then wheelchair bound for months. She missed 6 months of school. Laynes dizziness then miraculously became most days 'manageable'..for about 4-5months. Just recently this extreme dizziness has returned which has devastated her. She is afraid of being bedridden again for so long. Most kids dislike having to get up each morning and go to school. This is something she wants so much and she is so happy on the days she can make it. She, and her family would do anything to have her well enough to make it through this school year. During the 4-5 months that Layne had some improvement in her dizziness, and the whole family was getting back to their normal life, enjoying some happy summer times, then, her brother Logan, who is sixteen years old, had a huge decline in his health. Logan had previously been having "flares" every few months apart and during these flares, he'd have terrible pain in his legs and hips. The flares used to come every few months and last a few days. Lately theres been a frightening decline, with these flares now coming back to back and now affecting his spine. The flares have mostly left him bedridden in last few months. Since his last flare, Logan had just one week where he was able to attend school and walk before his present flare hit again. Logan was emotionally crushed as he once again is homebound. His pain is so painful at times that doctors have ordered up to 26 pills a day. This pain medication has not been working. He had just recently admitted to Toronto Sick Kids for a couple days and given morphine for the pain. They are working to find a diagnosis for Logan and are awaiting some more genetic blood work that has been sent to CHEO for testing, possibly also confirming EDS. The unknown is a scary thing. Julie continues to hope everyday that she will find a diagnosis and a treatment for Logan. 
Today as I write this, both Layne and Logan are not doing well. Julie lives each day acting more as a nurse, and is barely able to function outside her home. This is heartbreaking for her, and her whole family. When I asked Julie how I could help, all she said is that she needs counselling for her whole family. She told me that the kids need help on how to deal with all the pain, their lost childhood and an unknown future. They do not have coverage for this. One of the hardest things for Julie to do is to leave the kids alone while she continues to work some hours. She does not have any paid time off work. I know she wants more than anything to be able to be home to take of the children until they all can see better days. Since she has been working less, her significant other, Lee has taken on 2 jobs, working 7 days a week to pay the mortgage. The expenses I would like to help her with would include gas to get to Toronto for their frequent visits to Toronto Sick Kids, along with the other out of town expenses.  When both kids need/ want to get out of the house, they sometimes have to depend on a wheelchair. They could use a better one then the old and rusted out one that they now use.  We would like to raise enough money for Julie to be able to purchase all terrain wheel chairs for each of her children. They would benefit from being able to leave the house as a family. She needs to be able to stay home to care for her children without the added financial stresses. Days are extremely unpredictable. How does she work when she doesn't know if her children are even okay to be alone. 
More than anything she wants them to be healthy and while they aren't, to at least be home with them.
Please help me support her and her family. The pain is unbearable, inside and out. 
Thank you for your generosity.
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Donations 

  • Brenda Vivian
    • $10 
    • 8 yrs
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Organizer

Nichole Dever
Organizer
Belleville, ON

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