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About Ryleigh
Izzy would like to introduce you to Ryleigh "Ry" age 14, soon to be 15 in May. Ry is in 8th grade at GDS and has lived in Cottage Grove her entire life. Ry Loves musicals, princesses, Wheel of Fortune, Disney, animals, swimming and wants to go to the beach. She has two dogs, Stormy & Luke and a cockatiel named Tom. She performs on a cheer team for individuals with Special Needs.

Here’s some info about Ryleigh’s conditions. The main thing is a form of muscular dystrophy called Charcot Marie Tooth Disease (CMT) https://www.mda.org/disease/charcot-marie-tooth that causes degenerative nerve damage in her arms and legs that results in weakness and numbness, that will continue to worsen as she gets older. There is no cure or treatment. PT, OT and exercise can help but the condition results in her being very fatigued due to the extra energy she has to use to get her muscles to work, she uses a wheelchair sometimes if there is more than a bit of walking. She also has a duplication of part of her 17th chromosome called Potocki-Lupski Syndrome (PTLS). PTLS affects people differently but affects Ry in many ways including cognitively, being on the autism spectrum, and having low muscle tone and connective tissue problems. Not much is known about the combination of CMT and PTLS so how Ryleigh’s life will unfold physically is a bit of a mystery.

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