Your Stories: Ocean Holidays boss on his son’s rare genetic condition

Harry Hastings tells Lucy Huxley how a corporate fundraising focus became a personal lifeline for his family

When Ocean Holidays picked a local children’s hospice as a beneficiary of fundraising efforts, Harry Hastings had no idea he would subsequently need to call on its services for his own family.

The operator’s co-chief executive first came across Haven House in 2018 when he married Nicola. The pair asked guests to make donations to the facility in Woodfood, Essex, close to where they live, in lieu of wedding gifts.

The following year, after surveying employees about the kinds of charities that Ocean Holidays should support, Haven House was selected as one of the holiday company’s corporate partners, and in early 2020, it committed to raising £25,000 for the charity over two years. Then the pandemic hit.

[Haven House] cares for over 300 seriously ill children and their families and needs £3 million a year to operate

“Haven House was desperate,” Harry recalls. “It cares for over 300 seriously ill children and their families and needs £3 million a year to operate, so we reassured them that we would continue as a corporate partner, despite going into lockdown.”

It was a crazy time for the co-founder and owner of the Florida specialist.

We were about to go into lockdown but we were normal, first-time parents of a healthy boy. It all seemed very straightforward

“Walt Disney World shut on March 12 – the same day that my son Rudy was born,” he says. “We were about to go into lockdown but we were normal, first-time parents of a healthy boy. It all seemed very straightforward.”

But his world was about to be turned upside down. “About eight weeks in, we noticed that Rudy had some peculiar eye movements,” says Harry. “His eyes seemed wobbly. We went to an ophthalmologist, then to private GPs and physios in Harley Street, who said Rudy was a bit floppy. By the end of June, he was having seizures. We thought our son had epilepsy.”

‘Hospice offers amazing support’

By October, the couple had received a diagnosis from Great Ormond Street Hospital that Rudy had a severe, life-limiting, rare genetic condition called MCAHS1. This was due to both Harry and Nicola having a recessive mutated PIGN gene, a condition that affects fewer than 100 families in the world.

Rudy’s symptoms include epilepsy, severe intellectual disability, hypotonia (floppy muscles), mobility issues and a suppressed immune system. All known cases of MCAHS1 are also non-verbal.

Ironically, in a bizarre twist of fate, Rudy was eligible for the services offered by Haven House, the very charity that his parents had been supporting since before Rudy was even born.

The couple had received a diagnosis from Great Ormond Street Hospital that Rudy had a severe, life-limiting, rare genetic condition called MCAHS1

“In an unbelievable coincidence, we discovered that Rudy qualified for Haven House Children’s Hospice and we are fortunate enough as a family to benefit from their amazing support,” says Harry.

“It’s a place where Rudy benefits from a range of therapeutic services including music therapy, yoga and physio, and occasional respite care and counselling for us.”

Ocean Holidays continued with its fundraising efforts for Haven House during the pandemic, spurred on by Rudy’s own story.

We discovered that Rudy qualified for Haven House Children’s Hospice and we are fortunate enough as a family to benefit from their amazing support

Last autumn, the company organised the inaugural Rudy’s Ramble as part of its Haven House fundraising programme. Despite grey skies and damp conditions, 65 family, friends and colleagues dressed in bright orange and stepped out one Saturday in October to complete a combined 121-mile walk in aid of the hospice. The group raised £5,800.

After two years of fundraising events, Ocean Holidays has surpassed the £25,000 target it set to support Haven House’s vital work back in March 2020. It has more activities planned too, such as the second Rudy’s Ramble on October 9 this year.

‘I’ve had to dig deeper than ever’

And all this while Ocean Holidays not only survived the pandemic and shutdown of travel, but also increased the size of its Atol licence in 2021 by a greater proportion than any other travel group compared with 2019.

Harry says: “2021 was a record year for bookings. And this year we’re on course to double our revenue over 2019. I know that sounds odd but it’s the truth. We tried to provide really good service during difficult times and we’re now very pleased with how it’s going.”

Ocean Holidays not only survived the pandemic and shutdown of travel, but also increased the size of its Atol licence in 2021 

He adds: “Between running a travel business, the pandemic and my journey with Rudy, I have learnt so much about physical and mental health, and, like everyone, have had to dig deeper than ever before.

“Life throws all sorts of curveballs at us; however, we simply can’t control the uncontrollable. We can only do our best to control our response.

It’s been a hell of a journey but Rudy is a relentlessly happy kid who smiles and laughs all the time and lights up a room

“Our goal is to enrich Rudy’s path and enable him to achieve his maximum potential.

“It’s hard to know what life is going to be like for Rudy and this uncertainty at times can be really difficult. But on the other hand, having no expectations or any real benchmarks to compare him to, the sky really is the limit with what he could achieve.

“It’s been a hell of a journey but Rudy is a relentlessly happy kid who smiles and laughs all the time and lights up a room. He’s the most beautiful boy you could ever meet.”