THOUSANDS of pounds have been raised for the two young daughters of a popular Barnsley man who lost his life to an aggressive and rare condition which stole his ability to speak and move only months after symptoms first started showing.
Thomas Miller, from Worsbrough, died in July after being diagnosed with X-linked cerebral adrenoleukodystrophy (ALD) - a rare and incurable genetic condition that affects the nervous system.
Due to its links to the X chromosome, the condition typically only affects men, with one in every 20,000 males suffering - symptoms tend to appear at an early age, though Tom’s remained hidden until he was in his 30s.
Following a stay in hospital back in April, Tom’s health rapidly deteriorated as he lost the ability to speak, swallow or move - he died on July 25 at 38 years old, only a month after receiving a diagnosis.
Now, those close to him have committed to taking on the Sheffield 10k on September 29 as they hope to provide financial security for his two daughters, 12-year-old Daisy and Poppy, who turns eight on Monday.
Organiser and friend, Carl Griffiths, told the Chronicle: “I was all ready to take on the Great North Run last year but didn’t make it in.
“So I ended up losing track of myself and put a bit of weight on.
“I tried getting back into things and was going to Barnsley Barbell and doing a bit of jogging here and there when I decided ‘sod it, I’m going to do the 10k for Tom’.
“When I told the other lads they all went and signed up, then some others said: ‘oh I’ve got to do it now’.
“It all stemmed from there, everyone’s joining in now
“I saw Tom deteriorate in those last few months so I knew what was coming - but it was still so eye opening.
“We’ve got to get on with life now, you never know what might happen.”
Around 30 people have signed up to take part, including Tom’s parents Gary and Heather and sister Emily.
Carl has gone out and made shirts for those taking part and through a Go Fund Me page has managed to raise nearly £7,000 - seven times his original £1,000 goal.
The money will be used to help the two girls continue learning life skills and taking part in the same activities as their peers, such as swimming lessons, after school clubs and holidays.
The immense amount of support has been heart-warming for Tom’s family, who are still struggling to deal with the sudden loss.
They said: “It makes us feel so proud and honoured that Tom was so loved and well liked by all.
“He truly was a kind and decent man and this shows with all the support we are getting - it helps tremendously as it makes us as a family feel so cared for and gives us the encouragement to be able to participate in the race ourselves.
“Even his childhood friends, family and friends of the family are helping us and getting involved with us to make Team Tom a good cause.
“We want to give support back to them too as we feel so humbled that everyone is helping us and making the effort for Tom and his two daughters.
“Tom wanted to take his two beautiful daughters on a big family holiday abroad next year where they could have fun, go on water slides and eat ice creams - but most importantly to enjoy spending time with his daughters and family all together to give them special memories.
“Unfortunately Tom won’t be able to do this and so we are working hard and wanting to do it on his behalf and give Daisy and Poppy a holiday to remember and in memory of their dad.
“We want to show them the love and good times that Tom had as a child when he was growing up with his family.”
You can donate here https://www.justgiving.com/crowdfunding/carl-griffiths-905?utm—term=b7DM9BvDq
