Former Burgess Hill resident who lost ten-week-old son to rare muscle disease writes Christmas book in his memory

A former Burgess Hill resident whose ten-week-old son died of a rare neuromuscular disorder has written a children’s Christmas book in his memory.
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Dean Munro, 34, who lives in Dubai with his wife and daughter, lost his son Monte Gray Noel Munro to myotubular myopathy in June.

This is a disease that can cause severe swallowing and breathing difficulties in newborns as well as serious muscle weakness.

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The book, Monte’s First Christmas, is the first in a series that imagines what kind of adventures Monte could have had if he had not been born with the illness.

Monte's First Christmas by former Burgess Hill resident Dean Munro. Picture: Dean Munro/Authorhouse.Monte's First Christmas by former Burgess Hill resident Dean Munro. Picture: Dean Munro/Authorhouse.
Monte's First Christmas by former Burgess Hill resident Dean Munro. Picture: Dean Munro/Authorhouse.

Dean said: “It’s a story about him creating his list in the run up to Christmas, getting excited, sending it to the North Pole, going to bed, laying out the milk and waking up on Christmas Day.”

It all rhymes too, he said, and features colourful illustrations on every page.

“It’s how I was as a child at Christmas,” said Dean, adding that Monte is not depicted as a baby, but as an active three to four-year-old.

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“He couldn’t be a baby writing his Christmas list, or going to a football match, or being in a rocket,” said. Dean

Dean Munro and Monte.Dean Munro and Monte.
Dean Munro and Monte.

Dean is still in Dubai at the moment, running a beauty salon business with his wife, but he hopes to be back in Mid Sussex this December in time for the festive celebrations.

“It’s a massive thing for me Christmas because I’m so family orientated,” he said.

“Christmas is the creme de la creme, I absolutely love it.”

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Dean’s last visit to the area was in August when his family hosted a special golf game at Singing Hills Golf Course to raise money for the Myotubular Trust.

Dean Munro and his wife Kirsty.Dean Munro and his wife Kirsty.
Dean Munro and his wife Kirsty.

This trust has excellent scientists and doctors involved with it and promotes research and treatments for myotubular myopathy, said Dean.

The golf fundraiser made just over £20,000 with about £9,000 raised from the actual day itself.

Dean said he has just applied to the embassy in Dubai to get a licence to run his own charity events out there as well.

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He said there will be a fundraising aspect to his future Monte books and hopes that a percentage of the books’ profits can be donated to charity every quarter.

Ideally, he would like to release a book every three months or every season.

“Monte’s First Christmas wasn’t the first book I wrote,” said Dean, adding that it was just the most appropriate to publish in the run-up to Christmas.

His other books include Monte’s First Day at School, Monte’s Adventures at the Zoo and Monte’s First Football Match.

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The first book Dean wrote was Monte’s Journey to the Stars but Dean said this will probably be the third one published.

“I left school with zero GCSEs,” said Dean, who still sometimes finds reading difficult and had little creative writing experience before this.

“These thoughts just came into my head,” he said, adding that he wrote Monte’s First Christmas while his wife was putting his daughter to bed.

“It’s my way of dealing with losing my son,” Dean added, saying that he uses his writing to imagine the dreams Monte would have had and the adventures he could have gone on.

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It is a way of grieving without going into a spiral of depression, he said.

The illustrations in the book show ‘exactly’ what Dean had imagined and even include a toy bunny that his daughter gave Monte on the one occasion she was able to meet him.

“It’s also about helping people and I think these books potentially can help,” said Dean.

“If I can impact one person like that, that’s what it’s all about for me.”

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Dean hopes to host another Singing Hills charity golf event in August 2022.

People can purchase his book through Amazon and Authorhouse.

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 talked about his experience in our previous interview, which people can read here.

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