The family of a brave 10-year-old - who has one of the rarest health disorders in the world – are hoping to raise just over £5,000 to buy a specialist wheelchair.
Ellamae Coy, from St Neots, has a chromosome disorder that has led her to being diagnosed with a range of debilitating conditions from focal absence epilepsy to profound bilateral deafness and scoliosis.
Her mobility is classed as level 3 cerebral palsy.
Although Ellamae, who attends the Samuel Pepys School, has had to battle through many surgeries, her mum, Kat, says she is happy and loving.
“Ellamae has a rare chromosome disorder of a translocation of chromosomes 11 and 17,” Kat explained.
“It is that rare that there are no other cases in the world that have been recorded as yet.
“We are registered with the charity Unique and they have a worldwide database, we keep checking it to see if another has been found but as yet there isn’t.
“This means that it’s difficult to determine how it will affect Ellamae in the future.
“Ellamae has a cochlear implant, microcephaly, non-verbal, short stature and has to have daily hormone injections.
“Past surgeries include heart surgery and two lots of bowel malrotation surgery which now means her intestines are reversed.
“Despite these difficulties she is a very happy, cheeky and determined child.”
However, as Ellamae has grown up, the height of her wheelchair has meant it's difficult to lift her in and out.
The family decided to set up a GoFundMe page in hope of raising enough money to fund a specialist chair.
So far, just over £1,000 has been raised.
Kat continued: “Ellamae has a wheelchair through wheelchair services which although supports her, it is very high from the ground meaning that we have to lift her in and out.
“This has now become difficult the taller and heavier that she has got.
"We were told by the wheelchair service that there are none they could offer her and her case was closed at the end of 2020.
“So now we’ve set up this fundraiser and we are so thankful for any support we receive.”
To donate to Ellamae’s new wheelchair visit: https://bit.ly/2LWd6QZ and follow updates at: https://www.facebook.com/ECWheelchair/
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