I have created this on behalf of Paula Kemish.
Paula’s son Ezekiel is 2 years old. When Ezekiel was 12 months, his mum was told that he had Global developmental delay, but as time went on it was apparent to Paula that there was something more serious going on with Ezekiel. She got him seen again at 18 months where he had an MRI scan, which showed a lack of white matter in his brain. Doctors informed Paula that Ezekiel presented as a child with Leukodystrophy, a life limiting condition. At this point Paula was told that Ezekiel would not make it past 2 years of age.
Ezekiel is non mobile and needs specialist equipment. Paula is a single mum to 3 and has to give 24/7 care as he can have seizures and has stopped breathing while sleeping multiple times. Ezekiel also doesn’t sleep much through the night, because his muscles become extremely tight and cause him huge amounts of pain.
Ezekiel can learn new skills such as sitting by himself or babbling, but because of his condition this will only last a matter of days before he regresses and is not able to do it anymore.
Ezekiel has had endless amounts of tests and scans done. He had genetic testing done which came back with no answers except that Ezekiel may not have Leukodystrophy, but is still a possibility. They are completely unsure of what his condition is, although, Genetic testing did show an underlying condition called Craniosynostosis. This means that the bones in his skull fused together too early. Ezekiel is due to see specialists in Oxford in February, which could lead to having a serious operation on his brain.
There are still no answers as to what is causing the damage to the white matter in his brain. Medical professionals here have completed all testing they can do, with no clear diagnosis or prognosis. They are at a loss. This beautiful boy lights up the room with his cheeky smile and touches everyone’s heart that know him. It is heartbreaking for his family to have no answers or ideas of how to help him.
We want to help by raising funds for Paula to seek out specialist help to hopefully get an answer for Ezekiel’s condition. This could mean expensive flights and accommodation, visiting other countries to seek other expert professional advice or tests, without worrying about how she will pay for it.
If no answers are able to be found, the funds raised will be used to purchase medical and/or sensory equipment for Ezekiel to give him the best quality of life and to make magical memories with his older brother, older sister and his Mum.
Thank you for taking the time to read this and any donation would be hugely appreciated.