The mum of a toddler with a rare disorder has published a children’s book to help fundraise a potential cure.

Elly Gedye, from near Putney Bridge Road, wrote about a girl named Ella who goes on various adventures as anyone she wants to be.

Her son Mikaere, also known as Kai, was born in October 2016 and was diagnosed non-ketotic hyperglycinemia (NKH) which is a rare genetic disorder that affects one in 60,000 newborns.

It means he has difficulties breaking down the amino acid glycine because of a defect in his genetic code.

Kai has severe learning and developmental difficulties and cannot walk, crawl, stand or keep his head up.

Ms Gedye said: “[They told me] Most children don’t survive within the first two weeks, and if they do it’s with profound, profound disabilities, learning difficulties and seizures.

“Your baby may not live. He may not reach six months. He probably won’t make a year. He’s definitely not going to make five years.

“It’s crazy because it was shocking how quickly he responded to the medication.

“We found out on Thursday night he had started medication. By Saturday, he had his reflexes back. By Sunday, he was beginning to open his eyes, and by the Monday he was breathing over the ventilator.

“By the Tuesday, he came off the ventilator and by the Wednesday he was off all ventilation and he took his first meal.

“That was such a relief, it was so overwhelming. I am very, very grateful we even got that time with Kai. We got to experience what it was like to have a newborn.”

Wandsworth Times:

Mikaere 'on a bad day'. Photo: Elly Gedye

Kai was able to go home on Christmas Day but only spent three weeks at home before being readmitted into intensive care.

It was for a second time that his parents were told he wouldn’t make it but he again regained his abilities and went home on Valentine’s Day.

Now a team of researchers at UCL, led by Professor Nicholas Green, is trying to find a genetic therapy which includes Kai’s mutation.

Proceeds from ‘Eva the Adventurer’ will go into research for treating NKH.

She added: “It’s about a girl who imagines that she can do all these things. So every day she will go out on an adventure, and some days she will be an astronaut, some days she is a scientist, and some days she is an engineer.

“It’s a little bit non-conformist in that she’s not a princess, and the kind of things she is imaging are typically the things that boys do. So doesn’t play into any gender stereotyping.

“She’s a princess but she doesn’t need Prince Charming to come and save her, she can do whatever she wants to do.”

It has since sold more than 200 copies and translated into more than 10 languages, including German, Spanish, French, German, Dutch and Filipino.

To see the book, click here.

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