RETT...anyone heard of this? because not many people have. Well for myself it is very close to my heart. A very dear friend of mine fell pregnant the same time I did... we were so chuffed to go through it all together. Our beautiful babies were born a week apart in 2013 and we couldn't have been happier. Theo and Sofia were friends from the start.

From 8 months Sofia's mummy and daddy 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 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 When children may lose acquired skills and become withdrawn.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.

Back to Sofia.

Sofía is now 5 years old but Rett does not define her. Sofia is a very smart little girl who communicates with her Tobii eye gaze device and is currently in mainstream school and loves to be included and surround by her friends. Unfortunately Sofia is in a wheelchair and unable to stand unaided and has recently been diagnosed with Scoliosis and Epilepsy. Therefore Sofia has been attending physio in the uk since she was 1 but still could not weight bare. Sofias family were recommended CME physio ( an intense Physio which only a few people in the world are trained in). June 2018 Sofia travelled to Canada to start a 3 week intense course, where from the beginning it was heartbreaking to watch as Sofia was scared and upset, but by the second week Sofia was much more confident and standing with minimal support around her knees- she was like a different child emotionally -she was so brave.

This is where I come in... I would love to help my amazing friend get her very precious little girl back to Canada to have another block of intense Physio to continue her progress and to help build her confidence further. So I have decided to do a sky dive on the 12th January 2019 to hopefully make a difference to a very special family... every penny counts and I will be eternally grateful for any sponsors I receive.