‘They said he wouldn’t live to three — look at him now’

The Jewish Chronicle - - COMMUNITY NEWS - BY BARRY TOBERMAN

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

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