James is 5 years old and earlier this year he was diagnosed with HADDs syndrome, we are participating to help raise awareness of this syndrome, and to support all families and individuals effected by HADDS.
James was born in 2014 with a pretty regular but very quick delivery , james was a dream baby, rarely cried, slept constantly . James's difficulties started from around 6 months old, he was unable to be weaned and tolerate solid foods, he would gag and choke, shortly after he stopped making any babbling or cooing sounds and was unable to control his head, james didnt hit any of his milestones and didnt walk until he was 2.5years old. James has had numerous tests, seen multiple specialists and at the age of 3 was given a tempory autism diagnosis and DNA samples were given to the manchester gnomes project to check for rare genetic conditions.
That diagnosis changed in July 2020, when a genetics specislist video called me to tell me they had found a mutation in his genetics, this along with his long list of symptoms matched a condition called HADDs syndrome .
James is unable to talk, has poor balance and coordination, has no awareness of his toileting needs, overflex in both of his ankles causing further stability problems. Delay in both fine and gross motor skills, a turn in one of his eyes, an extreamly high pain threshold. But dispite this he is an incredibly happy little boy.
we are participating in this event to raise awareness, help fund further reasearch to help other families with the diagnosis, and those still looking for answeres.
Over the fundraising week james will be walking 4 miles each day, to total over the amount of a marathon .