‘They said he wouldn’t live to three — look at him now’
WHEN DARYLL Hawes was 11 weeks old, a consultant told his parents Lisa and Colin: “Take him home and enjoy him. You won’t have him past his third birthday.”
Today Daryll is 24 and living a productive and independent life and the Hawes are “eternally grateful” to the role learning disability charity Langdon has played in his development.
Speaking after making the appeal at Langdon’s 25th anniversary dinner at the V&A in Kensington on Monday, Mrs Hawes recalled that as a baby, Daryll was diagnosed with infantile spasms. “He didn’t have seizures — they were like ‘Salem fits’. He would rock forward all the time and might have 50 or 60 of those continuous movements with each fit.
“It was horrendous. He was our first born. We tried every medication and injection. Nothing worked.”
Fortunately, American relatives put them in contact with the head of neurology at UCLA. He explained that although what the Hawes had been told by doctors was correct, he suggested further tests in England to see if Daryll was one of the small number of people who might be a candidate for surgery.
At 22 months, he underwent a hemispherectomy, a rare procedure in which half the brain is removed, disconnected, or disabled.
“The aim was only to stop the seizures.They said he would never walk or talk after the surgery. He didn’t wake up for four days and the first thing he did was have a seizure. I went to pieces.”
But that was the low point. Daryll walked, talked — “never underestimate our son” — and was 15 when the Hawes first heard about Langdon.
Mrs Hawes was initially unhappy about the prospect of her son leaving the family home, then in Hatch End, to study at Langdon’s Manchester college. But it proved good for him as he made friends and picked up a variety of educational and life skills.
At 20, he moved into a Langdon property in Borehamwood and currently works four days a week for New Chapters, a Langdon business retailing secondhand books online. A massive football fan, he travels on his own to Chelsea games.
Sitting next to his parents, Daryll pointed out proudly that he has a fiancée, another Langdon member.
“Not quite a fiancée — he has asked her and it will happen,” Mrs Hawes clarified. “I’m getting used to it. We never thought that far ahead. She’s very good for him at things he needs reminding of. He’s good for her as far as socialising is concerned.”
Daryll added: “I like Langdon because they give me the independence I really wanted.”
The 400 supporters at the V&A dinner raised £400,000 for the charity’s work. Jonathan Joseph, Langdon’s chairman, told them that at a time of tighter local authority budgets and changing parameters for support, “Langdon can no longer rely on statutory funding to cover the basic needs of our members. We need to raise an additional 20 per cent just to stand still.” Around £4.8 million of the charity’s £6 million budget comes from government agencies. In a video message, Penny Mourdant, Minister for the Disabled, said the difference Langdon made to the lives of its members was “nothing short of extraordinary”.
Congratulating the charity, Chief Rabbi Ephraim Mirvis said: “As a community, we have a responsibility to provide equal opportunities for every child.”
Langdon was also praised by guest speaker Phil Vickery, the former England rugby captain. The “passion and enthusiasm” he had encountered on the night showed why it was achieving so much. “It is an absolute privilege to be among so many beautiful people.”
Daryll Hawes with Robert Bluestone and Phil Vickery