Ada is a nine years old cheerful girl from Abingdon in Oxfordshire born with CLP1 gene condition which affects every aspect of her life as she struggles with lots of difficulties and pains.

Ada has CLP1 gene condition, developmental delay, microcephaly and upper limb elasticity. Because of her general developmental delay, she needs 24 hours care and help with her daily routine. In addition, related to her limited movements, she uses pads and wheelchair. She also has feeding with a peg tube because of chewing and swallowing difficulties. Ada uses her peg for daily nutrition, medications and liquids.

Ada has endured two operations regarding her two in the past. Also, she has received botox treatment for her upper limb elasticity, but while successful this did not help her stiffness. She needs regular physiotherapy for this. At the same time she has sleeping issues because she has lots of cramps which make her wake up repeatedly.

Please help her to make a difference for the quality of her life.

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