Man who lost ten-week-old son to rare muscle disease holds charity golf event
A former West Sussex resident is holding a charity golf event after his ten-week-old son died of a rare neuromuscular disorder.
Dean Munro, 34, who lives in Dubai with his wife and daughter, lost his son Monte Gray Noel Munro to myotubular myopathy on June 14 this year.
This disease can cause severe breathing and swallowing difficulties in newborns as well as serious muscle weakness.
Dean and his family are now holding a special game at Singing Hills Golf Course, Hassocks, on Friday (August 13) to raise money for the Myotubular Trust, which promotes research and treatments for the condition.
“We went through something that no parent should go through,” said Dean, adding that some parents in his position could go into ‘a spiral of depression’.
“I want to make something from this and I want to do whatever I can to help another family, to help a child and to raise awareness,” he said.
Dean, who used to live in Burgess Hill, said that excellent scientists and doctors are involved with the Myotubular Trust and said all the money they get from supporters is ring-fenced for research.
He added that a golf tournament was the best way to raise money because of his life-long love of the game, saying that he was once the Junior Club Captain at Hassocks Golf Club.
So far Dean’s Virgin Money Giving page has raised more than £8,440 and Dean expects it to top £10,000.
Dean has also raised £1,600 from the players alone, with each participant donating a minimum of £20 to take part.
“I originally planned it for about 30 people but we had to extend it to 80,” said Dean, adding that he started a WhatsApp group to publicise the event and it just grew from there.
The game is now fully booked and some Sussex companies have paid to sponsor holes as well.
There will be a raffle at the end with prizes including golf equipment, trophies and free rounds of golf from various Sussex clubs.
Players will face financial penalties for mistakes too, with a lost ball setting a golfer back £5.
“It’s all about having fun really,” said Dean.
Dean is now back in the UK for six weeks, catching up with friends and family and taking a break from his career running beauty salons in Dubai – Locks By Lou Lou – with his wife Kirsty.
He said he felt overwhelmed by the support his fundraising efforts have received and said the death of his son has given him a different outlook on life.
“Before it we worked very long days and we were always chasing the pound note,” he said.
“That’s amazing but if you have this money and you haven’t got your family and the things that make you happy then what is the point?”
Dean said Monte was diagnosed with myotubular myopathy after six weeks and had a very severe case that meant he had to go on a breathing machine from birth.
He said the only way they could have brought Monte home was with a tracheostomy, a breathing machine that is built into the throat.
Dean explained that some children with the condition who have reached an older age have a tracheostomy and are able to walk, but Monte’s case was too severe.
The Myotubular Trust says that the most common and serious form of the disease is ‘x-linked’ and mainly affects boys.
The condition can be inherited too, but Dean said he and his wife took tests that revealed they are not ‘carriers’.
There seemed to be no reason why Monte was affected, said Dean, but he is determined to take this tragic event and make something positive out of it by raising money and awareness.
He said he also wrote a book for his son called Monte’s Adventure to the Stars and that a publisher has been in touch.
“Every day I’d read my son a book while I was in hospital, just talk to him and reading books, and I wrote a book about him,” said Dean.
Dean grew up in Burgess Hill, attending Manor Field Primary School and then Oakmeeds Community College (now The Burgess Hill Academy).
He worked as an estate agent in London until he was 26 and decided to take up an offer of becoming an estate agent in Dubai.
He said met his wife in Dubai in 2015 and they joined forces to run her beauty salon business.