Family goes green to raise awareness for Wigan tot's rare disease

Toby Cartwright as diagnosed with Congenital Myotonic Dystrophy (CDM) type one three weeks after he was born while he was still in the neonatal unit.

A few months later Toby's mum, Becky Cartwright, was diagnosed with the same condition.

Myotonic Dystrophy is a genetic condition that had been undetected in the family until the birth of the one-year-old.

It is a neuromuscular condition that effects the central nervous system and can have a range of symptoms which change and develop over the years.

Becky said: “Toby was quite poorly when he was born and was in neonatal for quite a while.

"It was found there that he had CDM type one, we had no idea we’d never heard of it before.

"Then we find out I had it but was unaware of it.

"It only came to light when we had Toby after he had genetic testing.

"I was diagnosed a few moths later after they did some genetic tests on me.

"Its very rare, a lot of health professionals and carers don’t even know about it.

"There is no cure for it, its a progressive disease and life-limiting.

"Toby is very cheeky, one of the first things he learnt was to smile and laugh which is something we didn’t know he’d be able to do.

"He’s obsessed with his family, he’s got so much strength and determination.

"When we go to appointments they can’t believe how well he’s doing.

"We know there’s a long road ahead”

Becky, her husband Brad and their families are now wanting to raise money for Cure DM who they were put in touch with following Toby’s diagnosis.

CureDM UK Charity supports individuals and families affected by DM, with particular focus on the most severe and under-represented forms of the disease, Congenital and Childhood onset Myotonic Dystrophy.

Emma-Jayne speaks from first-hand experience of struggling for answers, and co-founded Cure Myotonic Dystrophy charity after her son, Dregan, was diagnosed with paternally inherited Congenital Onset DM.

Becky and Brad decided to launch a fund-raising campaign to help raise money for the organisation.

The first event was Brad dying his hair green to mark international DM day on September 15.

They hope to plan more fund-raisers in the future.

Becky added: “CDM normally eases off as they go through childhood but as they hit puberty that’s normally when it takes off.

"I’ve noticed my symptoms more, like little quirks I didn’t really think of like being unable to open jars.

"We’re hoping to join the charity on a more formal basis and work in collaboration with them.

"My husband and his dad are hopefully running the Great North Run next year.

"Toby’s granddad which is my husband’s dad is doing a half marathon in a few weeks for Cure DM.

"As Toby turned one we’ve got the ball rolling with things we’ve wanted to do.

"Its been a really tough year for us all but hopefully now we’re starting to get things in place with the charity, get support from them and hopefully we’ll have some more stuff before Christmas and we’ve got some exciting plans for next year.”

To donate to the fund-raiser visit https://www.justgiving.com/page/becky-cartwright-1723149919415