Loving Chesterfield brother to run marathon after siblings diagnosed with a rare genetic disease

When Joshua Cooper, 38, started having problems with walking up the stairs, he never guessed it was the beginning of a serious genetic disease.

While working as a nurse in a high dependency unit at Northern General Hospital, he started struggling with getting up from his chair and soon was directed by his co-workers to get himself tested.

After several examinations Josh was diagnosed with Sandhoff Disease, a rare genetic condition which affects about one in every 300,000 people.

Over the last five years Josh’s muscles have got weaker and now he has to use a wheelchair the majority of the time and works remotely three out of five days a week.

Some time after Josh’s diagnosis, his older brother Ben, 43 who works at Wilkinson’s in Chesterfield, was diagnosed with the same condition, but his symptoms are completely different.

While Ben doesn’t have issues with walking, he struggles with his speech.

Josh and Ben’s brother, Daniel Cooper, 41 said: “Suddenly you have to sit there and get your head around it. Life has changed, but we have pulled together and we get them through as best we can – and they enjoy their lives, even though there are many restrictions.”

The brothers all live in Hasland and Josh and Ben are one of only three pairs of siblings affected by the Sandhoff Disease in the UK.

Sufferers have various cognitive problems, many experience loss of muscle coordination, speech issues and can lose their ability to walk.

As the disease is very rare and there is not much awareness around it Daniel has decided to run in London Marathon on Saturday, October, 2 and speak up about the condition, which has completely changed his family’s life.

Daniel said: “For me to run a marathon I just need to train and I will get better. There are tough moments, but you can train and improve. Whereas for Benjamin and Joshua it's never gonna get better.

“They keep going to work every day, and every day is tough, and It's never gonna get easier for them. I admire them a lot for doing that.”

Daniel said Josh and Ben are really pleased that he is running the marathon but as they are not attention seekers and prefer to keep to themselves.

He added: “They don’t want people to feel sorry for them, but they have agreed because they want people to know more about the disease.”

Daniel, who used to run 10 years, decided to get back to his old passion for a good cause and has made a three months training plan.

He has encouraged one of his co-workers from recruitment company in London to train with him and has started a JustGiving page to support The Cure and Action Tay-Sachs (CATS) Foundation.

CATS charity is raising awareness of Tay-Sachs and Sandhoff disease, funding potential treatments through sponsorship and providing support to affected families.

Daniel said: “Not everyone can run a marathon, but everyone can support and tell people they know about the disease, raise awareness. And if someone can donate, that's wonderful.”