Rhiannon C's quilt    (Quilt Completed)

Thank you

Could you pass on my thanks to those who made the quilts, the kids loved them and have them on their beds.

Finished photos

Individual squares

Card

Stitched by: Nicky Forshaw

Biography

Rhiannon struggled from birth, quickly dropping to just below the 2nd centile in weight. She was clumsy and accident prone, crushing her big toe and breaking her elbow before she was two. At three, she first started physiotherapy for her ankles which could not support her walking. By six, she was still unable to walk any distance and was diagnosied with Elhers Danlos Syndrome. This is a genetic condition that affects the integrity of the collagen and as such can weaken soft tissue associated with organs, muscles, ligaments and skin.

From Rhiannon's diagnosis her Dad's doctors were able to diagnose him and help him understand why he had gradually gone from being a fitness instructor to being considerably disabled. In 2013, he needed major brain and spinal surgery to save his life which was very distressing for Rhiannon and her two brothers. Her eldest brother has also since been diagnosed and her younger is in the process of being diagnosed.

After a three week rehab program at GOSH, Rhiannon began walking short distances. Now, at fifteen she suffers with chronic pain and fatigue and uses an electric wheelchair to help her access education. She is experiencing intestinal failure due to the muscles in her intestinal tract not contracting properly and is awaiting surgery to have a port fitted to enable her to clear out her intestines manually. She suffers frequent dislocations, bladder issues, and seems to be following her Dad in terms of issues with her spine.

Life is an endless round of dr appointments, as each symptom is treated independently. More recently, regular hospital visits for decompaction have made keeping up with school work difficult. As we as a family begin the process of more surgery for Rhiannon's Dad we cannot be more proud of how Rhiannon is dealing with the situation and her own health issues.