Running the New York Marathon in memory of 10-year-old Hal

Tess Swallow and her husband Ant overcame the “logistical nightmare” of training to run the New York Marathon, raising £7,666 in memory of their nephew Hal, who was cared for by Chestnut Tree House.

Both Tess and Ant were fit before, but this was a big challenge for them. “I’d run a marathon 13 years ago, and I just kind of did it on youthful naivety,” says Tess, who lives in the French Alps. “I did train, but nowhere near what I should have done. I got through it that time because I was 27, but this this time I had a training plan. I ran four days a week, and within about a month I was running 50 kilometres a week, so you build up those miles quite quickly. We have three children and we both work full-time, so that was the only way we could do it. I’d get up at 5.30 all through the summer holidays. My life became very small.

“You have to be very focused and that’s why it was so great to have a charity like Chestnut to focus on.”

The hospice near Arundel is close to Tess’s heart because of its connection to her nephew Hal, who was born a healthy baby to Matilda and Damian Taylor from near Petworth in West Sussex.

“Hal had problems feeding and didn’t meet his first six-month baby milestones. He couldn’t walk, talk, sit or stand and only ate pureed foods, however he was well in himself and had a joyful smile and laugh. Sadly, Hal’s symptoms got worse, and after a long and complex journey for the whole family, he was finally diagnosed at the age of seven with a progressive life-limiting mitochondrial disease.  Having mitochondrial dysfunction leads to more chronic infections such as ear and chest infections. He lost the ability to swallow and suffered from epilepsy. He was frequently in hospital and his quality of life decreased.”

Chestnut Tree House worked with the whole family – including Hal’s siblings, Willow, Rafe and Hebe. They made wonderful memories together using the hospice’s pool, sensory and soft play room together and Hal also stayed regularly on his own, allowing the family respite to rest and regain their strength. Hal died at home when he was 10 years old, and Chestnut Tree House provided practical and emotional support at this most sad and distressing time. After Hal’s death, remembrance days at the hospice brought the family comfort, ritual and routine.  “Hal was a bright shining star,” says his mother, Matilda. “He taught the whole family to count our blessings, be kind, take things slowly and be accepting.”

When some friends in New York suggested the marathon to Tess and Ant, they knew it was a big enough challenge to ask friends and family to sponsor them in Hal’s memory.

At one point injury prevented Ant from training for six weeks and he thought about deferring. After speaking to Matilda – Hal’s mum – he decided he would get round, even if it meant walking all the way. In the end he achieved a personal best and was in the top five per cent for runners of his age group.

The day of the race was hot and humid – the hottest New York Marathon since 1984. “As you set off, they sound the start gun and play Frank Sinatra’s New York, New York which is really amazing,” says Tess.

“You are immediately part of this very dramatic landscape. As soon as I started, I realised what everyone was talking about. It was hot. I was sweating, just drenched, from the beginning.”

While she was disappointed not to meet her target time, Tess far exceeded her fundraising expectations.

“I have no interest in running another marathon,” she says. “This was all linked with Hal. You know, he never had a chance to run, to jump, but he rose to every challenge. It seems right that I should challenge what I’ve been given and use it to the best of my ability, in the way that Hal did.”