This is Charlee. She’s my friend Natalie’s 19 month old little girl. Charlee has Moebius Syndrome, a very rare neurological disorder. 1 in 500,000 children can be born with this condition and at the moment we don’t know why.

For Charlee the simple things we take for granted she finds difficult to do. She is unable to smile, eat orally and swallow. She also has hypotonia (floppy muscles) which affect her movement and motor skills, a clef pallet and one kidney. She is currently fed via gastric port into her lower bowel. As she gets older and with therapy we hope that she will begin to eat orally. I’m raising money to support my lovely friends in taking their little girl to America for essential treatment.

Whilst the NHS have been great in treating Charlee’s medical needs there is no one in the U.K that has the expertise to give the therapy she now requires. The clinic in the US offer innovative therapy to children using the latest state of the art treatments, techniques and therapies. Charlee will have access to specialist therapists that are trained in neurodevelopment, sensory integration and sensory motor development, as well as speech and language pathologists, Occupational and Physical therapists all under one roof.

Myself and a group of friends are taking part in the Hemel Triathlon on Sunday 1st of October. This will be a huge challenge for me having never done anything like this before, but the motivation of helping Charlee will get me over the finish line. Any donations to help fundraise for Charlee’s treatment would be gratefully received.

Thank you for your support

Bella