Mother of man who died from rare gentic illness talks of his legacy

Matt studied law at Southampton University before studying for the Bar at Cardiff.

Matt studied law at Southampton University before studying for the Bar at Cardiff.

First published in Winchester

IT WAS the proudest of days.

As Matt Simmonds was formally called to the bar at London’s Lincoln Inn in October 2005 after completing years of legal training, the sun shone and his parents Zandra and David beamed.

As always, the trio made the most of the occasion, celebrating an achievement that was all the more considerable given that Matt suffered from the rare genetic disorder von Hippel-Lindau syndrome.

The disease prompted tumours to grow in his brain and neck and went on to claim his life at the age of 39.

A recent inquest heard how a “reckless disregard of patient safety” resulted in his death because agency nurses did not ensure that his ventilator was turned on.

Now with the official proceedings finally over, Zandra wants to remember Matt before he was bed-bound and mark the life of her charismatic, determined and caring son, who made sure he relished everything positive in his life.

Zandra and David’s only child was born in 1972 into the house where the family have lived ever since in Oakmount Road, Chandler’s Ford.

Matt attended Toynbee School, where he made a cluster of life-long friends, sang in the choir and played drums for the swing band.

While studying for his A Levels at Barton Peveril College, he joined a band of ex-servicemen and toured the South’s military bases entertaining the troops while - according to Zandra - occasionally “having sausage rolls thrown at him”.

By this time Matt already appreciated the need to wring the most out of every day.

Aged 14 he was diagnosed with von Hippel-Lindau syndrome.

His father David suffered from it too and, in a devastating twist of fate, they both developed brain tumours simultaneously in 1997.

All this could have resulted in a dismal household.

But while the seriousness of their situation was acknowledged, it was actually filled with love, companionship, laughter and merry family bickering.

Zandra’s eye shimmer with pride as she recalls how her musical Matt composed a piece for piano, strings and wind instruments to mark his parents’ 40th wedding anniversary in 2001, then helped plan a surprise party at their home.

“I know it was tragic that both of them had this condition but we had tremendous quality of life, we had such fun,” said the 71-year-old.

Matt cooked many a spontaneous supper for the steady stream friends who dropped in: “I was always his sous chef, I’d peel the veg and then get a rollocking for some reason,” Zandra giggles.

There was alot of teasing.

Matt’s stock answer to anyone asking after his mother was a, frankly,libellous “still flat out on the settee reeking of gin and regrets”, despite the fact Zandra was undoubtedly completely sober and probably pottering around the garden pruning roses at the time.

“Matt could be extremely serious but he was such great fun – though it was no good arguing with him because he always had an answer,” she says.

“He would have a go at anything.”

Including, as it turned out, standing for Tory councillor in 2006 in a strongly Liberal Democrat ward.

How apt then given Matt’s sharp intellect and erudition that a law degree from Southampton University should lead to the Cardiff Bar Vocational Course.

He blamed his desire to become a barrister on a curious mind, or being “just basically nosy”.

Too unwell after another tumour in 2006 to embark on a pupilage, Matt instead launched a mediation company in Southampton.

In between his legal work, he raised money for Naomi House “because he felt those children had less time than he had”, fell in and out of love, and travelled extensively to the likes of America and Italy.

His father David, a traffic policeman, died in 2007, aged 66.

“I don’t think he every got over that,” says Zandra.

“He said his father was the only person who understood his condition.”

As a way of distracting them both, the sensitive Matt would suggest to Zandra of a morning that they “go and get a newspaper”, only for the corner shop trip to turn into a day of exploration and a drive to somewhere like Bath.

It turned out they had just two years respite before Matt’s final illness began to develop.

“Love each day for what you give it and for what it can give you,” was his philosophy and he abided by it right to the end.

It’s now nearly three years since Matt died and his cluster of old Toynbee school friends and former girlfriends are all still in close contact with Zandra, dropping in for coffee, mowing her lawn and sending her pictures of their children.

The group is so close knit that Zandra carries photos of them all in her purse.

“For that I am really grateful. That is his legacy,” she says, with a dignity that is her hallmark.

“Matt has ensured that I always have people around me.”

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