‘My one in six million condition makes walking feel like stepping on hot coals’

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A younger sportsman who was recognized with a “one in six million” condition which makes him feel like he’s walking on “hot coals” on account of nerve harm in his toes is making ready to deal with the London Marathon for the charity that saved his life.

On New Year’s Eve in 2015, Dominic Moore, a 28-year-old who lives in Huddersfield, West Yorkshire, was out partying and “enjoying life” – however simply three days later, he seen bruises throughout his physique and blood blisters in his mouth.

Given his mom Sarah, 50, is a nurse, this raised alarm bells they usually booked a GP appointment – however Dominic, who works as a roster government on the airline Jet2, was despatched residence with medicine for despair.

Dominic visited one other GP days later and, after quite a few checks, the then 20-year-old was recognized with aplastic anaemia – a condition which means your bone marrow can not make sufficient new blood cells – at Huddersfield Royal Infirmary in January 2016.

Doctors quickly advised him that with out remedy he had days to reside.

“I’d literally gone from being a healthy footballer, just living life at 20 years old, to that all disappearing overnight,” Dominic advised PA Real Life.

He began remedy right away on the Teenage Cancer Trust unit at St James’s University Hospital in Leeds, which included chemotherapy, a bone marrow transplant from an American donor, and numerous platelet and blood transfusions.

While Dominic’s well being has improved post-transplant, he has been left with a number of unintended effects from his therapies, akin to nerve harm in his toes, which creates a “burning” sensation each time he walks.

Dominic was advised by docs he was on “death’s door” a number of instances all through his time in hospital – however now, he has challenged himself to run the 2024 TCS London Marathon to offer again to the charity Teenage Cancer Trust.

“The main message is, there is a positive side after you’ve been through the treatment and I’m proof of that,” Dominic mentioned.

“Granted, not everyone makes it, but you’ve got to be strong. You’ve got to make sure that you’re the person that survives it, you’ve got to put yourself first, and you’ve got to do everything you can.

“There were so many times I was told I’d probably die, but I’m not dead and look at me now.”

When Dominic was recognized with aplastic anaemia in January 2016, he was transferred to the Teenage Cancer Trust unit at St James’s University Hospital in Leeds, the place he obtained remedy for the next two years.

He mentioned he was advised by docs that aplastic anaemia impacts “one in six million” individuals and he was one of 5 individuals with the condition in the UK on the time.

Dominic underwent platelet and blood transfusions day by day for six months, together with six rounds of chemotherapy – however this “all failed” and docs then seemed to a bone marrow transplant as the subsequent step in his remedy plan.

Given his brothers weren’t a match for the transplant, docs contacted the charity Anthony Nolan and there have been three appropriate donors the world over on the register – in England, Germany, and the US.

The nameless American donor was the closest match, in order that they deliberate for the transplant to go forward in September 2016, however this was delayed to the next month on account of a system outage.

It was at this level Dominic was advised he was on “death’s door” and he might solely have a number of days to reside, and his household even thought of paying to fly him to America for the transplant – however Dominic was decided.

“Life is precious and I went to six funerals in that first year, from getting close to people (on the ward) and people dying,” Dominic mentioned.

“When you’ve been to so many funerals, and so many people have died who you’ve got really close to, you haven’t got time to moan and complain.

“You’re going to be upset, you’re on death’s door, but you can’t feel sorry for yourself because as long as you’re alive, there’s always someone worse off.”

In October 2016, Dominic underwent the bone marrow transplant, which replaces bone marrow with wholesome cells, and he mentioned it solely took round 5 minutes to finish the remedy.

“As it stands now, I’m 98% American, which is brilliant,” he mentioned.

However, post-transplant Dominic remained on the ward for 40 days as he developed Graft-versus-host illness – the place white blood cells assault the affected person’s physique.

He was taking 65 tablets a day at one level, together with a trial drug known as Rituximab which he responded positively to, and his well being regularly began to enhance from there.

Dominic has been left with a number of unintended effects from his therapies nonetheless, as he has “a low platelet count”, and this implies he can now not play contact sports activities as a result of danger of “blood clots and bleeds on the brain”.

His toenails expanded as a result of chemotherapy as effectively, main to 2 nails being eliminated, and he sustained nerve harm in his toes which implies it feels like he’s walking “on fire or hot coals”.

“I’ve got a really low platelet count – it does go up, and at the moment I have once a year check-ins, but they’re nowhere near where they should be,” Dominic defined.

“It means I can’t do contact sports again, which is massive for me as I was a footballer before – but it’s not the end of the world, I’m still here.”

Dominic mentioned he believes his optimistic mindset, together with the “amazing work and facilities” on the Teenage Cancer Trust unit, helped him via essentially the most difficult instances.

With a juke field, pizza nights, PlayStation 4 and pool competitions on the ward, it helped him “forget” he was in hospital and it gave him the motivation to maintain going and focus on “surviving”.

Although Dominic felt like he needed to “start from zero” in spite of everything his therapies ended – studying the way to alter to a brand new “normal” and returning to work 4 years after his prognosis – he mentioned he has a newfound “appreciation” for all times.

Now, he needs to thank his American bone marrow donor, as he “wouldn’t be here if it wasn’t for him”, and to offer again to the Teenage Cancer Trust and its workers on the hospital as “they are second to none”.

He has since challenged himself to run the 2024 TCS London Marathon for a second time, having raised greater than £4,000 for the charity by finishing the occasion final yr, and he will likely be taking part along with his pal Jamie this time round.

Although Dominic “hates” operating, he feels it is very important problem himself and provides again to those that “saved (his) life”.

“It is literally like running on coals, so doing that for five hours will be excruciating. I’d say it’s 10 out of 10 pain,” Dominic mentioned.

“But you’ve got to push yourself in life, you’ve got to challenge yourself.

“I live on challenging myself, I don’t want to get stagnant in life, and running the London Marathon is a challenge that I want to complete, and it’s mainly for the ward.

“For the people after me, they need to keep that ward going… they’ve saved my life so the least I can do is try to raise some funds for them to keep it going.”

Teenage Cancer Trust’s problem occasions increase important funds to assist younger individuals like Dominic via remedy.

To discover out extra, go to: teenagecancertrust.org/challenges, and to donate to Dominic’s JustGiving web page, go to: justgiving.com/fundraising/jamie-wilkinson6 .