New Wheelchair for Ellamae

Our daughter Ellamae has a rare chromosome disorder of a translocation of chromosomes 11 & 17 (in basic terms - duplication of part of chromosome 17 that has attached itself to chromosome 11 that has a deletion), it is that rare that there is no other cases in the world that has been recorded as yet. We are registered with the charity Unique (rarechromo.org) 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.

So far she has been diagnosed with focal absence epilepsy, global developmental delay, hypermobility syndrome, profound bilateral deafness (she has a cochlear implant), microcephaly, non-verbal, short stature (she has daily hormone injections), scoliosis and her mobility is classed as level 3 cerebral pulsey. Past surgeries include heart Patent Ductus Arteriosus surgery and 2 lots of bowel malrotation surgery which now means her intestines are reversed.

Despite these difficulties she is a very happy, cheeky and determined child.

Ellamae currently 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 of the chair which has now become difficult the taller and heavier that she has got.

We had an assessment done at wheelchair services at the end of 2020 in the hope of a wheelchair that she could, with support, get herself in and out of without the need for lifting. In which after the hour long appointment we were told that they have none they could offer her and due to her non awareness & safety a self propel isn’t suitable and so the case was closed.

So the hunt is on to find a chair suitable and looking to fundraise for the cost hence setting up this fundraiser. We did try contacting wheelchair services with regards to a voucher to pay for part of the chair but there has been no answer to any emails or phone calls.