Just4Children are fundraising to allow Sofia to have regular occupational therapy, speech and language therapy and specialist equipment to allow Sofia’s body to stay as strong as possible.
Here’s our story.. Sofia was born July 14th 2013 a healthy baby, at around 8 months We started to notice that Sofia couldn’t weight bare and wasn’t hitting her milestones. Unfortunately at around 13 months Sofia started to regress and could no longer feed herself or play with her own toys. She had no purposeful hand use anymore. Sofia started to be distressed for hours on end. Tests begun and at 17 months and Sofia was diagnosed with Rett syndrome.
What is Rett.
Rett Syndrome is a rare neurological disorder. It is present from conception and usually remains undetected until major regression occurs at around 1 year of age. When children may lose acquired skills and become withdrawn. Affecting mainly females and very few males. Which results in needing 24hour care for the rest of their lives. Genetic but largely not inherited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.
Back to Sofia.
Rett does not define her. Sofia is a very smart young lady who communicates with her Tobii eye gaze device and is home schooled and loves to be included and surround by her friends. Sofia is in a wheelchair as she is unable wait bare at all.
We are hoping to raise enough funds for Just4Children to allow Sofia to have regular , occupational therapy, speech and language therapy, hydro, hippo therapy and osteo, both in the UK and the specialist equipment to help her be able to access beachs and off road areas and everyday support associated with such therapies to allow her to live her best life.
Sofia is a very determined young lady. She has been through so much but continues to make us prouder every day! She won’t let anything stop her!
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