UK children's charity is raising money for brave Flitwick girl

Charity Just4Children are fundraising to allow six-year-old Sofia from Flitwick to receive the regular treatment she needs for a rare neurological disorder.

By Sam Dean
Friday, 10th January 2020, 6:00 am

Sofia has Rett Syndrome which causes profound and multiple physical and communication disabilities meaning that she will require support from others for the rest of her life.

Sofia was born in July 2013 a healthy baby. At around 8 months her parents began to notice that Sofia couldn't weight bare and wasn't hitting her milestones. Tests begun and at 17 months she was diagnosed with the rare condition.

However, Rett Syndrome does not define Sofia. She is a very smart girl who communicates with her Tobii eye gaze device and is currently in mainstream school and loves to be included and surrounded by her friends.

Sofia, aged 6, from Flitwick in Bedfordshire

Sofia uses a wheelchair but since starting CME physio in 2018 she has been able to stand for short periods of time.

CME (Cuevas Medek Exercise) physio, is an intense physiotherapy which only a few people in the world are trained to deliver. In June 2018, Sofia travelled to Canada to start a three week intense course.

Although Sofia was scared at first, by the second week she was more confident and began standing with minimal support.

Just4Children are hoping to raise funds to allow Sofia to continue to have regular CME physio, as well as occupational therapy, speech and language therapy, hydro and hippo therapy both in the UK and abroad that make all the difference to her day to day life.

Affecting mainly females and very few males, Rett Syndrome is genetic but largely not inherited. It is usually caused by a fault on a gene called MECP2 which is found on the X chromosome.

You can find Sofia's fundraising page here: