Meet the little boy who is one-in-a-million – after battling a disease so rare it is leaving him stuck to the floor like glue and unable to get up for up to a week at a time.
Kylian Gealer, two, was given the likely diagnoses of alternating hemiplegia of childhood (AHC) – a disease which is caused by mutations in the ATP1A3 gene and means sufferers will experience repeated attacks of hemiplegia which is paralysis of a portion of the body – in November 2020.
Kylian’s mum, Jolene Gealer, 35, took her little boy to the doctor after he was suddenly not able to walk on his right leg.
After a year of appointments and tests, Jolene was told it was likely AHC- which is so rare only one in every one million children worldwide suffer from it.
The disease is described by doctors as being like having seven diseases all at once – epilepsy, paralysis, cerebral palsy, Parkinsons, ADHD, autism and Alzheimer’s all rolled into one.
Jolene fears for her little boy’s future after he is often unable to move a muscle – and left as still as a statue – by the condition, which has no cure.
Mum-of-four Jolene, a stay at home mum, from Bolton, Greater Manchester, said: “I live everyday on edge.
“I just don’t know when Kylian is going to have an episode.
“It is heartbreaking that he is going through this and I can’t help him.
“He gets frustrated a lot and lashes it out.
“It’s so hard because there is no cure and no day is the same.
“When he has an episode it is just like all of a sudden he can’t walk.
“He just drags his right leg behind him and struggles to get up.”
Jolene had had a feeling something was wrong ever since she had a traumatic birth with Kylian in August 2018.
“I had to have an induced birth and then he wouldn’t wean and didn’t stand up until 11 months,” she said.
“I knew something wasn’t quite right – my mother’s instinct was telling me, but the doctor’s said everything was OK.”
Kylian started to twist his arm inwards and Jolene took him to the doctor.
“They said nothing was wrong but I was still worried about him,” she said.
“One day he suddenly stopped walking on one of his legs.
“I was so scared I didn’t know what was happening.”
Jolene rushed Kylian to Manchester Children’s Hospital, Greater Manchester, and was told Kylian likely had some neurological problems.
After testing Jolene was told Kylian likely had AHC – a disease that affects only one in one million children.
“I hadn’t even heard of it,” Jolene said.
“They told me there was nothing they could do.
“AHC is like having epilepsy, paralysis, cerebral palsy, Parkinsons, ADHD, autism and Alzheimer’s all rolled into one.”
Jolene has no idea what each day will bring for Kylian.
She said: “He will choke on his food and he keeps forgetting things he has learnt.
“He used to call me mama but now he can only say ma.
“He acts up a lot because of his ADHD.
“Each day I’m on edge because I don’t know if he is going to freeze.”
Kylian has had two major episodes, with the most recent lasting for just under a week.
“When it happens he just can’t move his right leg suddenly and he can’t move.
“And we just have to wait for it to pass.
“It is terrifying.”
Kylian has now been referred to St Mary’s Hospital, Manchester where specialists have also determined that he has myoclonic seizures.
“It’s so hard on him,” Jolene said.
“I hate to see that my little baby boy is unhappy.
“We are living in hell.
“Everyday is a struggle.
“I just want everything to be OK for my little boy.”
You can make donations here – https://uk.gofundme.com/f/kylian-a-brave-boy