Hays Travel branch manager to skydive after losing baby to rare condition

A Hays Travel branch manager is preparing to confront his fear of heights in a charity skydive nearly 30 years after losing his baby daughter to a rare genetic condition.

Peter Holgate, who manages the agency’s Cheltenham shop, is raising money for Spinal Muscular Atrophy UK ahead of his plunge from 15,000ft on June 28.

“I love flying but I’m petrified of heights, so I’m not going to be enjoying this one bit,” said Holgate, whose daughter Stephanie died from SMA Type 1 at seven months old in January 1997.

Although he and his wife Michelle raised money for the Bristol Royal Hospital for Children soon after Stephanie’s death, Holgate was inspired to start another fundraising drive upon hearing former Little Mix star Jesy Nelson speaking on breakfast TV about her twins’ SMA diagnosis.

“I nearly dropped my spoon in my cornflakes. Her twins have exactly what Stephanie had,” said Holgate, who added that his daughter was one of only two children in the UK with SMA Type 1 at the time of her diagnosis.

Recalling Stephanie’s experience, he said: “We had a little boy, Christian, and he was as fit as a flea. Fifteen months later, in June 1996, Stephanie was born. Three months in, my wife had some intuition and said, ‘I don’t think she’s moving quite as much as Christian used to.’”

The couple saw a specialist, who diagnosed Stephanie’s condition.

“It’s like motor neurone disease, but in children,” said Holgate, whose daughter died in intensive care after spending three days in Bristol’s children’s hospital.

“There isn’t a day that we don’t think what could have been and what she would have been like,” he said. “You never get over it, but you’ve got to live with it.”

Holgate would like the rest of the UK to follow Scotland’s lead by including SMA as one of the rare conditions covered by the newborn blood spot test, a check recommended for babies at five days old. 

“If it were done en masse, no family would go through the hell we’ve gone through,” he said.

Holgate, who hopes his fundraising drive will raise at least £1,000, said the skydive will be the “scariest” challenge he has faced.

“My wife thinks I’ve gone mad, but it will feel better to do something outside my comfort zone and to raise money while doing it,” he added.

● To donate, visit: justgiving.com/page/peter-holgate-1