This is Matilda, she is 4 years old. She is the most funny, caring and adorable girl who makes us smile every day.

At the age of 14 months Matilda was referred to her GP due to concerns about her walking, she had a wobbly gait and always needed assistance from an adult. The GP advised go back when she was 2 years old, however, still concerned I took a video of her walking and went back to show the GP when she was 18 months old and the GP agreed this was not normal and she was referred for a hip X-ray for clicks hips, which came back clear. Matilda was then referred to the Head Physiotherapist and Consultant Osteopath who advised she was on the edge of the normal range of movement and again was checked for a clicky hip which was clear again. At this point Matilda was then referred to the Paediatrician to eliminate anything further. I took Matilda to a private Chiropractor who upon seeing Matilda was unfamiliar with her symptoms but contacted an expert Paediatric Chiropractitioner who suggested Limb Griddle Muscular dystrophy. In June 2016 we met with the Paediatrician who suggested Spinal Muscular Atrophy, we’d never heard of this before and panic set in. Blood tests were taking in July 2016 and following a problem with the sample another blood test had to be taken in August 2016. The blood tests results did not come back for 10 agonising weeks and on the 16th September 2016 it was confirmed that Matilda did have Spinal Muscular Atrophy. On the 6th October 2016 we had our first appointment with the Specialist at Leeds who undertook an assessment and confirmed that Matilda had type 3 Spinal Muscular Atrophy. It was at this point that we were told the devastating news that there was no treatment available for Matilda in the UK.

Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting (atrophy).

Although Matilda is diagnosed as a Type 3 she is at the worst end of Type 3, in some instances she resembles some Type 2 issues. Matilda has a walking frame, a wheelchair and a Wizzybug (first powered chair on a charity loan scheme for under 5's). As Matilda is growing her legs are becoming much weaker and can hardly walk a few steps, so her aides are an absolute must for her. She is now at an age where we can get her a powered wheelchair but as you can imagine these are expensive. This will allow Matilda to as independant and inclusive as possible.

We expect it may take a couple of years to reach our goal, which is why we have started fundraising now.

Thank you

Rachel (Matilda’s mum) xxx