IF there were children's awards for bravery, little Micky Welch should have won one.
Since birth he had suffered from a debilitating condition called Neurofibromatosis, a genetic disorder affecting one in 2,500 people worldwide.
The condition makes a person prone to malignant tumours and birthmarks, and can leave them seriously disfigured. But the determined youngster refused to let the disorder stop him from living a normal a life as possible.
He shrugged off the jibes and cruel jokes he endured from strangers and attended school, enjoyed listening and singing along to Elvis and collecting model cars.
But the "cheeky" boy has lost his fight for life aged just 13 and one month, and his family are now trying to come to terms with life without him.
Mum Jackie Welch, 48, of Blackhorse Lane in Walthamstow, said: "He was a very brave and courageous little boy. It was his smile that touched everyone.
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"Sometimes he had bad days when people were horrible to him, but there were good people too, and we explained that he was special and loved and as long as he tried it did not matter.
"We did not see what other people saw. To us he was just a normal little boy and just as cheeky as any other."
Neurofibromatosis can affect families with no history of the condition through new gene mutation. The Welch family had a history of the disease and knew there was a one in 10 chance Micky would have it.
His brother Ross, 21, has a less serious form of the disease, but Micky was born with a tumour on his face which doctors could not remove because of its close proximity to his brain.
Doctors told his mum and plasterer dad, Bob, 55, that their son would have to live with the tumour and predicted he would probably, "never walk or talk".
But despite being small for his age, and paralysed down his right side caused by a stroke when he was a baby, Micky defied doctors by becoming an able boy and a popular member of Whittingham Community Primary School in Higham Hill Road, Walthamstow, enjoying swimming, listening and singing along to music and playing with his toy cars.
His sister Kate, 28, who has a three-year-old son, Bobby, said: "It was amazing to see him prove doctors wrong. They said he was a miracle baby because of what he could do. They said it was because of the determination of him and his family."
But Micky had to cope with sporadic seizures and the discomfort of the heavy tumour, which affected his balance, and when he reached puberty the disease accelerated, and he went blind in one eye.
Last year he had kidney failure, infections, and received regular treatment at Great Ormond Street Children's Hospital, before he died peacefully surrounded by his family at 5.30am on April 21.
Jackie said: "We never thought it was going to kill him. It was just a spin of the dice whether he would have had the disease or not. He was just unlucky to have it on his brain.
"I feel very privileged to have a son like him and to have had him for 13 years. But I would have liked to have had him for a little longer."
Research is being carried out into neurofibromatosis and while experts have identified the cause, no cure has been found.
Posted by: Thoughtful, E17 on 11:23am Thu 8 May 08
This is a sad story, but at the same time it's inspiring to hear how a child coped -- not just with the disease but with stupid people's cruel comments. It's a reminder not to whinge about trivial problems, too.
This is a sad story, but at the same time it's inspiring to hear how a child coped -- not just with the disease but with stupid people's cruel comments. It's a reminder not to whinge about trivial problems, too.
Posted by: Thoughts and Prayers, Indiana (US) on 1:08am Sat 10 May 08
It always makes me sad when I hear of someone losing their fight with this disorder. Your family will be in my thoughts and prayers.
I am grateful for any mention of this common yet little known disorder, but I would like to make a correction to some info in this article, the tumors in this disorder are usually benign, but they can turn cancerous. More info on the disorder can be found at http://www.ctf.org
It always makes me sad when I hear of someone losing their fight with this disorder. Your family will be in my thoughts and prayers.
I am grateful for any mention of this common yet little known disorder, but I would like to make a correction to some info in this article, the tumors in this disorder are usually benign, but they can turn cancerous. More info on the disorder can be found at http://www.ctf.org
I am proud to say that Micky was one of my closest friends. His story shows how people can pull through anything with determination and the support of everyone around you as he did for his entire life. I can honestly say that I will never meet anybody like Micky, a person who triumphed over dificulty and could not have been more kind and caring. Traits hard to show while having to endure spiteful comments from ignorant strangers who did not take the time to look past his appearance and get to know the person inside. They will never know the boy I knew and I will miss.
I am proud to say that Micky was one of my closest friends. His story shows how people can pull through anything with determination and the support of everyone around you as he did for his entire life. I can honestly say that I will never meet anybody like Micky, a person who triumphed over dificulty and could not have been more kind and caring. Traits hard to show while having to endure spiteful comments from ignorant strangers who did not take the time to look past his appearance and get to know the person inside. They will never know the boy I knew and I will miss.
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