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Super Sofia’s Story

Sofia is 4 and lives in Chester. She has Diplegic Cerebral Palsy and her dream is to be able to walk completely independently.
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Super Sofia’s Story

Sofia is 4 and lives in Chester. She has Diplegic Cerebral Palsy and her dream is to be able to walk completely independently.

Sofia was born at 24 weeks and 6 days with her identical twin sister Sienna after my waters had broken at 19 weeks and 6 days. The girls were so poorly and both born with Ecoli Sepsi that they needed maximum support for everything. Sienna’s lungs were just to underdeveloped and we had to make the heart breaking decision to withdraw care 7 hours later.

Sofia had a long journey ahead of her and was in hospital for 102 days. She has endured more than most have in a life time. She was oscillated which pumped 600 breaths a minute into her lungs, on 100% oxygen, had 11 blood transfusions, countless blood tests, 3 lumber punctures, a long line from her arm to her tummy and laser eye surgery in both eyes. Sofia had to have routine brain scans as she was born so early which showed damage had happened on the left side of the brain. Each scan seemed to bring more bad news.

Sofia had an MRI scan when she was discharged which showed damage on the right side of her brain too. We were heartbroken but we loved our girl no matter what and would do whatever it took to give her the best life possible.

Sofia’s life is not alike a typical toddler. It involves countless hospital appointments and daily physio that started at 7 months old but this has been key to help her brain rewire around the damage.

We started private therapies and Galileo vibration training for Sofia back in December 2019 and she has already made amazing progress. However, the spasticity in Sofia’s body makes movements much harder for her and over time it can cause damage to her body and her mobility is likely to deteriorate. We are lucky that Sofia has been approved for potentially life changing spinal surgery on the NHS. The surgery is called Selective Dorsal Rhizotomy. This procedure aims to reduce spasticity in the lower limbs.

This surgery is just the beginning. After surgery Sofia will have to learn how to use her body without the spasticity and will need intense physiotherapy for 2 years to ensure the surgery is effective as possible and to give her the best chance of as much independence as possible. Therapy will then slightly reduce but will continue for life.

 The children who get the best results do so much therapy including intensive sessions where they have therapy for 3 hours a day for a week. We are fundraising so we will be able to access the equipment and the rehabilitation that will be essential to help her to achieve more independence. 

Sofia is the most determined hard working little fighter so if you can help her in any way we will be eternally grateful.

 Thank you for taking the time to read this. 

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