Meet Piper – she is the happiest of little girls, she was our Christmas eve miracle, surprising us 7 weeks prematurely, spending her first 3 & half weeks of life in NICU. She suffers from two very rare chromosome disorders, which affect chromosome 2q37.3 and 7q33-36, also she has severe Scoliosis and will have to undergo life threatening surgery in the near future, epilepsy, global developmental delay resulting in her being non verbal for words but she definitely makes you know she’s here and Piper does not walk. As a result of all of these we have been in and out of hospital, lengthy weekly appointments and therapies.
Edit * 27th September 2021 P underwent a gruelling 11hour operation to help reduce her 110degree spinal curve. After months of sleepless nights, constant worry, pros and cons being weighed up, mummy and daddy guilt we decided to put all our trust in her amazing surgeon (we owe him the world). P curve was reduced to 50degree!! The operation was needed as her lung was being crushed by her spinal curve making it difficult for her to get full lung capacity resulting in a lack of quality of life. She now catches colds, which are just basic colds unlike before which would result in real difficulty breathing, and trips in and out of a&e over and over again. P is smashing it!
She is currently the only person on the world database to suffer from the 2 chromosome disorders, so the future for Piper is unknown.
Due to Piper not walking we have to carry her up and down stairs and it is becoming too dangerous the bigger she is getting. We are lucky that our local authorities can provide a DFG to help with the adaptations to our home but sadly it doesn’t cover the complete cost. So we are trying to raise money to help fund a number of adaptions to our home which will make Piper's life a lot easier.
To make Piper's life safer, easier, promote her independence and dignity we need to adapt our home with a through floor lift that will allow Piper to be able to get up and down the stairs safely in her wheelchair, a wet room for washing, bathing and hygiene needs as we currently have to lift Piper in and out of the bath and on the floor for changing, and extend Piper's bedroom to allow room for a safe bed and the lift.
We have a rough estimate of 25k needed that we need to fund ourselves on top of the DFG. We would love to make this possible for our little girl to have these things at home so she feels safe, happy and comfortable just like we all should in our homes.
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.