Piper is full of smiles and laughter everyday, she’s the most determined little girl. She loves going for walks, looking at the trees and cars going past, she loves water and doing her therapies in the hot tub. She enjoys playing throwing and rolling balls and playing with anything loud and bright.
Piper loves going to school, she attends a special SEN school and it’s amazing, she thrives so much when she’s there. And most of all she loves spending time with her mummy, daddy and 2 sisters.
Piper has 2 rare chromosome disorders 2q37.3 and 7q33-36, she’s the only one in the world database to have these 2 so we face the unknown. But they do effect her global developmental delay, muscle tone, suffers reflux, prone to pneumonia, she is non verbal for words but you will certainly know Piper's around – you will hear her before you see her. Piper doesn’t walk but can get around crawling like the speed of light. Piper also has epilepsy and severe scoliosis, which requires life threatening surgery in the near future.
Despite all she faces on a daily basis Piper gives 100%, she is cheeky and would win anyone’s heart with her big smile.
Due to Piper not being able to walk we require adaptations to our home to make getting Piper up and down stairs safely, currently we are carrying her up and down and it’s becoming too unsafe. Giving her an accessible home we hope to promote her independence as much as we can. We also need to give her a wet room to provide the dignity for hygiene needs. We are lucky the local council is offering the DFG but sadly it doesn’t meet the full cost so we are left to fund the rest.
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Joined 3 - 17 - 2021