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Ryleigh was diagnosed with Crohn's disease 4 years ago. She has spent these years suffering from pain, fatigue, complications, and fatigue. She has spent more time in Vancouver the last year than she has in her home town of Vanderhoof. As her mother, it has been a struggle to see her go through learning how to deal with this disease.
Ryleigh has been through so much. When diagnosed she started receiving typical medications....but they did not work. Then her disease started to affect her overall health and growth. She became so sick she needed to be sent to Vancouver via air ambulance. Her first long term stay at BC Children's Hospital was for 3 months. She experienced a brain lesion, a deep vein thrombosis, and surgery to remove her large intestine (colectomy) and now lives with an ileostomy (or as she calls it a poop bag). We thought that she was on her way to experiencing a remission...this was not the case.
Her Crohn's disease began to affect her joints, her energy level, and continued stomach pain. Her medical team was not sure how to help manage these symptoms as traditional medication and treatment was not working. She proceeded to have a stem cell transplant - with the hope that her immune system would have a reboot. She went through this with such courage and positive spirit. Again we relocated to Vancouver. She spent three months in hospital - going through some serious medical procedures. Unfortunately, one year later she is still struggling with pain, fatigue, joint pain and swelling.
She is just finishing her second month on Thalidomide - an expensive, experimental drug. It is supposed to show success 4-8 weeks after start of the medication....she is on week 6 and if anything she seems to be getting sicker and in more pain.
Ryleigh is at a crossroads in her care. She will continue to need to come to Vancouver (almost 1000km from home) to receive care and help at BC Children's hospital. She also needs some home support and a possible mobility device. As well, we are looking at a referral to Sick Kid's Hospital in Toronto- more travel expenses. These are all things that our health care does not pay for.
As her mother and single parent of two chronically ill daughters, I am struggling with making ends meet and am wondering how to manage the continued medical care expenses that are needed to help Ryleigh find her way to remission. We have received so much help and support already from friends and family but a chronic illness has no end just as the financial need does not end.
Ryleigh wants to go to school, hang out with friends, walk the dogs and even be able to do chores! Please help us get her there.
Please know that when Ryleigh gets healthier and experiences remission we will pay it forward and do the best we can to help others. I guarantee it!
To see our family's story please go to my blog nothings-perfect.com.
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