Brave teen loses fight for life 

 

 

A teenage boy whose bravery in coping with a rare condition astounded his family, friends and doctors has lost his fight for life.

Young Will Tweedy was an inspiration to many for the way he refused to be downtrodden by a condition which meant his body rejected solid foods and he had to be fed through a tube.

Such was the football-mad youngsters' courage he was named the Evening News' Hero of Heroes at the Local Heroes Awards two years ago.  

Earlier this year he further astounded doctors by becoming only the second child in the UK to undergo such a major transplant operation for the second time.

The 14-year-old, from Mile End Road, Norwich, underwent pioneering surgery to have his liver, colon, small bowel, pancreas and parts of his stomach replaced.

However, his brave fight for life came to an end last Monday after his body rejected the second transplanted liver and he died from complications.

Today, his parents Lorraine, 43, and Kevin Tweedy, 48, a TV engineer, issued a joint statement paying tribute to their “hero”.

It said: “We are completely devastated that Will has passed away so suddenly. He has touched the hearts of everyone he met. He lived his life with passion and always gave his all even when he was so dreadfully ill.

“Will achieved things in his 14 years that even the doctors didn't think he would be able to. That was through sheer determination to prove them wrong and that he could do it.

“We are trying to hang onto all the good memories, and there are many. We want to thank everyone who has supported us on Will's journey and all the lovely letters and cards he's received. They kept him going when times were dark.

“We miss him so, so much but he's now at peace and, knowing Will, he is somewhere riding his bike around and having a great time.”

Will was born 10 weeks prematurely with a rare condition classed under the umbrella term of intestinal pseudo obstruction. Every time his parents tried to feed him he would have a severe reflux and vomit as he was unable to absorb food.

Such was the rarity of the condition that there were likely to be only a few children in the world with it.

He was prone to infections and contracted septicaemia several times which sometimes led to him being treated in intensive care.

He spent much of his life in hospital and first received a new bowel and liver in 2004. However, he was left fighting for his life after his body rejected the new organs and in March this year he underwent a multiple organ transplant at Birmingham's Children's Hospital.

Despite all of this, the City of Norwich School pupil refused to be downhearted and was well-loved for his sense of humour and cheery disposition.

He managed several long bike rides for charity, including 33 miles for East Anglia's Children's Hospice only nine months after his first transplant.

He recently went on to the set of television show Top Gear, where he was driven around a race track at 165mph with cult driving hero The Stig.

His parents added: “His greatest loves were football, fast cars and his dog Jake.

“He gave so much back. He was always worrying about his family and that he might spoil things for us.

“On ward eight in Birmingham Children's Hospital he would always worry about the other sick children.

“He loved making the babies laugh and would always play the clown and tease the nurses giving them nicknames and telling them to stop slacking, not that they ever did.

“His motto was 'Where there's a Will, there's a way'. He said this before his first transplant.

“He was so shocked when he was voted hero of heroes and a little embarrassed, but he wanted to draw attention to organ donation. He couldn't understand why we put him forward but he was always our biggest hero.”

Tributes have also been paid by nurses on ward eight at Birmingham Children's Hospital, who said: “William was an integral part of the family on ward eight, and we are all so proud of how brave he was.

“He will be remembered in our hearts for so many things, his sense of humour and infectious laugh, his soft and sensitive side which loved big hugs, but most of all sitting and chatting with him. We will miss him.”

 

Aysin Djemil from Pistachios in the Park had this to say about the brave young teenager:

 

Where’s a Will There’s a way


 

I first met Will back in 2001, when we first set up “Pistachios in the Park” he came into the Café on his bike with his Dad Kevin and little brother close behind. With his memorable cheeky grin, feeding tube coming out of his nose. He would start asking me questions, as if we’d known each other a long time. His Dad would buy his brother an Ice cream and himself a latte`. Will would continue talking to me and he’d light up when I tell him that I had three sons the youngest of which was about his size and called Josh. The same name it turned out as his younger brother. My Josh and Will were the same age and would become friends. Indeed it would be Will’s initial charm that would pull me close to Kevin and his family, with whom all my sons ended up socializing with. Will and Josh would play football, ride their bikes and on three occasions be part of a large team of Park Users riding our bikes for Charity.

Being the size I am and extremely unfit I would deliberately choose to be in charge of the younger members of our team, and I remember Kevin and Will were in our group.

Not long from the start I would signal for a rest and we would stop. As it happened I was the only one gasping for air and all the youngsters including Will would complain that we had stopped yet again.

For a child to be ill all his life you would never have known it.

I never knew him to be down, disheartened, or jealous. I remember him as a very lively and extremely  active, endearing boy.

 

After Kevin and Lorraine left Lewisham for leafy Norwich we would hear of Will turning poorly and having to undergo a bowel and Liver transplant. We all prayed and willed  that it would be a success.

 

It was to everyone’s joy that Kevin and Lorraine would visit with Will, and what a pleasure to see this young lad; no feeding tube, queue up to the counter with his Dad and order a Chocolate Ice cream.

 

It was with this memory that I smiled to myself when I heard Lorraine’s speech at the funeral; that just before his first transplant he would say, “Where’s there’s a Will there is a way”

How fitting and true to a lad that would always have a cheerful disposition and show nobody the hurt and maybe even the fear, that he would be enduring. Truly a  Hero of all Heroes”.

 

To Kevin, Lorraine, Ben, Sophie, and Josh we salute you in having being blessed with the presence of such an amazing human being whose absence will surely be missed by all those who knew him.

 

We are extremely honoured to have met you Will……!!!

 

 

Aysin ,Karen, Ben, Kayleigh, Remie, Toby and Josh