A Wellingborough woman says seeing her daughter stop breathing after suffering a 45-minute seizure has moved her to raise awareness of the rare condition she suffers from.
Seema Adam’s daughter Jessica, three, was rushed into hospital after the episode last week.
She suffers from a rare mutation called PCDH19 where one gene doesn’t work and triggers a seizure, which she first suffered at 13 months old.
It is so rare and little-known that many children with the condition don’t know they have got it, with one in 10 who suffer seizures having some form of the mutation.
And now mum Seema says she wants to make as many people aware of it as possible to prevent the trauma she went through.
She said: “So few people know about it and even the doctors don’t know that much, we’ve been researching it loads as a family.
“Even now we are still learning about it and at one point Jess was in hospital in Oxford for five weeks suffering 24 seizures in every 24 hours.
“We got very lucky last week, she stopped breathing and was very vacant which was so worrying.
“She’d been two years without a seizure so it was a little bit out of the blue but we couldn’t leave the house for almost six months because of her immune system.
“She has many different types of seizure, it’s not all about the violent ones where you are on the floor shaking.
“Sometimes she will smack her lips and then fall asleep or just daydream, and doctors say they are all seizures.”
The condition affects girls in more than 99 per cent of cases, with no cure yet known.
Jess is now back home with her mum and dad Jamie – and now Seema is hoping to raise money to help find a cure by completing the 25km Waendel Walk.
She added: “Jess is back home and being naughty again, which is great.
“The condition could fade away when she reaches puberty but until then it’s something that will play a big part in her life.
“There are so many people out there who don’t know about this condition and we want to raise awareness of it.
“The PCDH19 Alliance is a great charity and they’ve been a godsend throughout all of this.
“The walk will be a big challenge for me and we want to raise as much money as possible.”
For more details on donating or to help in any way, contact Seema by emailing firstname.lastname@example.org.