Sophias wish to walk
Hi Everyone,
As most of our families and Friends know our daughter Sophia who was born at 32 weeks was diagnosed with cerebral palsy at 8 months old. This news was completely heart-breaking for us as a family and the thought of Sophia not been able to do the things other kids can do broke us. When Sophia was a baby she would cry all day and night. With daily visits to our GP and paediatrician this was put down to colic which we knew could not be the case.
Sophia was in pain due to tight muscles. Finally at 6 months old we were advised Sophia was not meeting her milestones like other kids of her age and an MRI was requested. This is when we found out the devastating news that Sophia had a reduction of the white matter on her brain known as PVL which causes cerebral palsy. This affects sophias 2 legs and her right arm. We were told Sophia may never walk or talk. She may never sit unaided or crawl. So far she has accomplished everything but standing and walking. This is down to daily hard work and physiotherapy which she endures daily and goes through so much for a little girl of her age. Sophia is so determined and works so hard.
Sophia is a gorgeous, funny, and really strong 4 year old little Girl. She loves to have fun and all she wants to be able to do is walk like her sister. Sophia is getting to the age now where she is asking why she can't do the things other kids can do which is completely heart-breaking for us and so upsetting for her. She is totally amazing and anybody who meets her loves her. We are looking to get Sophia really strong to be able to get her to her best. At the moment Sophia would be confined to a wheelchair and walk for short distances in a walker. We are looking to get sophia the pioneering surgery in the US called SDR. This is carried out in St Louis hospital with Dr Park who has carried out more than 4000 SDR surgeries and has helped so many children to be able to walk independently and give them a pain free life. It removes the spasticity in the legs to enable them to be able to walk and to prevent contractors and and hip issues as children grow. It will also help her to gain so much independence. At the moment sophia needs so much help with her day to day tasks as well as help during the night with turning and helping to stretch her tight legs when she is in pain. Sophia gets alot of muscle spasms due to tight muscles which affects her daily life and impacts her sleep severely. I need to sleep in sophias room with her to be able to turn her through the night and to massage her legs when she is in pain all through the night. No child should go through this unbareable pain. Sophia has gone through so much in her short life and fights through it all.
WE NEED YOUR HELP. We are looking to raise money for SDR and intensive physio therapy to give Sophia the chance to live the life she deserves and to be as independent as possible. We need to raise a total of €130k in order to be able to give Sophia this incredible chance of been as independent as possible and to have a life free of pain. The best age to get this highly successful surgery is between the age of two and six. The funding would be for the surgery itself as well as the equipment required and Sophia will need intensive physiotherapy to build her strength for a number of years after . We would really appreciate as much help as possible as we cannot do this alone. We are calling on friends and family to share our story with as many people as possible and to local business in Kildare and surrounding areas to sponsor our fundraiser and to donate anything they can that will help give Sophia this amazing chance.
We will also set up a facebook page so we can show Sophia's progress and everything we are doing with her in regards to therapies and all updates we may have. The link below gives a detailed description of the SDR procedure and what it involves and also the second link describes how the pain constantly endures affects sophias daily life including sleep.
https://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/pain/
Thank you so much. We really appreciate your help
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