After his younger brother Tom sadly died 24 years ago, Sam Herschell channelled his grief into fundraising. He’s run the London Marathon and Bidwells Oxford 10k raising thousands in Tom’s memory, and this September, he’ll go the extra mile at the South Coast 100k Ultra Challenge. Sam tells us about his brother and why it’s important to him to raise money and awareness.
“He’ll be my angel on my shoulder”: Taking on 100k challenge in loving memory
Our Tommy Tucker
As a family we called him ‘Tucker’ as in Tommy Tucker. The name just stuck. My brother had Duchenne muscular dystrophy and died on 25 November 2002 – aged 16.
My parents noticed something wasn’t right when Tom was a toddler and missed his crawling and walking milestones. He was clumsy and often fell injuring himself. It must’ve been horrific for them, as people questioned if everything was alright at home.
Tom was two when he was diagnosed with Duchenne, becoming the first person in our family. I learnt about the condition, that he’d need a wheelchair, what his life expectancy was and that things would look different. Receiving the news hits you hard. But the love and support from people around us was phenomenal and got us through a difficult time.
Adapting to life with Duchenne
By the time he was 10, Tom was a full-time manual wheelchair user before using an electric chair. To make life more comfortable we made home adjustments including an extension converting a bedroom and a bathroom downstairs. We extended door frames so his wheelchair could fit, had sliding doors, touch senser taps, harnesses to lift him into his electric bed.
“For us, it became the norm and our new way of life. It didn’t feel like we did anything special, as it’s what he needed. Our friends visited in amazement – it was like we had a futuristic house.”
As an older brother, growing up I just wanted to protect him.
His love for the game
Tom lived and breathed football – loving everything Manchester United. His favourite player was Eric Cantona. A lady at his school was married to Eric’s binman. He posted a letter through his door. We received a letter from Eric’s-then-wife Isabelle Ferrer thanking us for sharing his story with a signed shirt from Eric and the team.
Tom loved wearing that shirt despite it being XXX large on him. We now have it framed in our house. I loved the Club even more for doing that.
“I miss playing football together. I’d throw the ball up for a header or he’d charge towards the goal in his wheelchair. Just because he had a disability didn’t mean he couldn’t do it, he loved playing wheelchair football.”
If there was a latest console or game out, we’d do whatever to get it, as that was his freedom and he loved expressing himself through gaming.
One Christmas our dad surprised us with a Sony PlayStation. My brother cried tears of joy and we were ecstatic. It was a special memory together.
I find Christmas such a hard period, as his anniversary is just before. Sometimes, I need to switch off and reflect. Tom never had a driving licence, drove a car, saw his 18th or 21st birthdays, drank a beer, or went on a lads’ holiday. As his brother I felt bad that he missed out on those experiences.
His passing
Living with the condition made it difficult for Tom to fight infections and illnesses. Ultimately leading him to his death.
The year before passing he had a chest infection, which turned into pneumonia and he was rushed to Great Ormond Street Hospital (GOSH). Thankfully, he survived. We were told we were lucky to have him for another year. It was a poignant moment as a family, as we knew we didn’t have long left.
The following year a common cold, turned into an infection, an infection turned into pneumonia. He was treated on a respiratory ward full of older people – it was horrible to witness, as he was so young.
Following his passing, it was a struggle of ‘what do we do now?’. As a family you’ve been carers for so long whether it’s lifting, putting him in a wheelchair, turning him in the night. To go from caring for my brother to suddenly not having him was a huge void.
Now as a father to my daughter, my caring role has returned, albeit in a different way. She’s like the daughter my parents couldn’t have, as following Tom they decided not to have any more children. She’s given them an extra lift, a new lease of life and focus following his death. They love spoiling her but why not as you only live once. Life is short on this planet and as a family we really understand this.
There’s been many times when I’ve felt his presence. Once, I visited the dentist and was thinking of him. When sitting in the dentist’s chair his funeral song ‘Everything I do, I do it for you’ by Bryan Adams came on the radio. That was a sign of him getting in touch – it was a crazy moment when I needed it the most.
Award in his memory
The secondary school that Tom attended was always supportive. He was deeply missed when he died. To honour him the Thomas Herschell Sporting Excellence Award was created in his memory at Sunbury Manor School.
The prestigious award was designed for sporting achievements. Students who’ve won have become professional footballers and athletes. Each year we attend and present the award to the chosen student, so Tom’s name and legacy lives on.
Turning grief into a positive
Tom was never down, never cried, never moaned and was always happy and smiling despite everything. The impact my brother had on me is still very much with me. I look for the positive in everything, which inspired me to fundraise for a good cause.
Running the London Marathon in 2010 is something that I’ll never forget. Wearing the Muscular Dystrophy UK top and the whole crowd cheering was electric.
My friend completed the 100km Ultra Challenge and encouraged me to sign up. I’m 44 this year, so it’ll be a challenge. I’m doing it for Muscular Dystrophy UK, as that’ll give me an extra kick.
Within weeks of setting up my JustGiving page (including my brother’s photo) people that I’ve not spoken to in 20 years contacted me saying how nice it was to see Tom’s face and smile again, as it was infectious.
Tom would’ve thought I was mad doing the challenge but raising awareness is so important. I hope he’d be proud of me.
He’ll be my little angel on my shoulder.
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