Caitlin is a 7-year-old from Northampton, England. Her mother says, “She makes our hearts burst with pride at her resilience.”
A Message from Caitlin’s Family:
From the age of two Caitlin was sent for various tests, MRIs, EEGs, observations, medications. She was first diagnosed with microcephaly, epilepsy, spastic paraplegia, global development delay, cortical blindness (CVI) and dystonia. Medics would describe her behaviors as ‘odd,’ then one devastating day we found out the diagnosis was KIF1A, a degenerative disease that robs children of their vision and ability to walk, and Caitlin would be disabled. Then just over a year she was also diagnosed with Raynaud’s syndrome and then later Type 1 Diabetes. This has been the hardest to manage of all with her daily hypos and hypers, injections, sugars taken 8 times a day, canula changes every 2 days, pump fitted 24/7. She endures regular botox injections in both legs, and casting for a month.
Throughout all this she still laughs and sings her heart out. She makes our hearts burst with pride at her resilience. My only wish for Caitlin is for her to be happy and continue to develop her independent, strong willed, fun loving character. I would love for a treatment one day to take away her pain and constant falls.
I hope that awareness will be raised to find a treatment for this little known disease and help beautiful children like Caitlin.