Story
Thanks for taking the time to visit my JustGiving page. My son was born in January 2020 with a very rare congenital syndrome called Moebius Syndrome. This is where the 6th and 7th cranial nerves are underdeveloped or missing, meaning that people with Moebius have facial paralysis (sometimes referred to in medical journals as a 'mask-like' face), difficulties blinking and closing their eyes, and an inability to move one or both eye(s) laterally. This also means that individuals with the syndrome cannot smile, or make facial expressions. Sometimes, this also leads to problems with speech and being understood.
Moebius syndrome affects approximately 1-2 individuals per 100,000, and has a range of additional potential effects, including limb differences. My son is part of a special group who also have Poland Syndrome, which affects approximately 30% of individuals with Moebius. There is currently no known cause for either Moebius, Poland or the Poland-Moebius combination. We have been supported in our journey by a number of charities and I am hoping to raise money for this charity to support any other new parents in our position, as well as individuals with Moebius throughout their lives.
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