It's strange to look back and see that I was so lucky. That I got through so much mucking around and then got diagnosed before my aorta ruptured. It didn't and I live with an awareness now, terrible but life-giving. Remember, if you see someone who looks too much like me, just tap them on the shoulder and ask. They may not know, just like Liam, below:
Tragic family's vital message
FUN-LOVING: Sunderland supporter Liam Gash.
Liam Gash was enjoying the trip of a lifetime to Australia when he died at 22 of a rare condition...
The day Liam Gash was born, his dad Alan was the proudest man in Sunderland. Liam was a perfect baby – and a big boy too.
"Look at his huge hands," Alan said to the doctor. "Are they supposed to be like that?"
The doctor smiled. "He's just a big lad," he said.
Delighted, Alan rang the relations. "Our son's got goalkeeper's hands," he told them.
Over the years doctors often commented on Liam's extremely flexible joints and his height. When he was five-years-old he reached 4ft 5ins; at eight, just over 5ft.
By the age of 21 he had reached 6ft 10 and was nicknamed "Crouchy" after tall footballer Peter Crouch, but no one knew that his excessive height was a symptom of a condition that would prove fatal.
At that stage of his life he had everything to live for – great mates, good job, close family.
An avid Black Cats fan, the civil servant played in a Sunday league team and never missed a Sunderland match.
He had a great zest for life and is described by Alan, a watch manager at Fulwell Fire Station, as: "A great kid, a wonderful man."
Like scores of other young Wearsiders the former Monkwearmouth School pupil wanted to explore the world and in November 2005 he waved goodbye to Alan, mum Jane and sister Lucy, now 20, to embark upon a dream backpacking trip.
But he would never return to the family home in Ullswater Grove, Fulwell.
On August 9 last year the family received a phone call that would change their lives forever.
It was from a doctor at the Royal Perth Hospital. Liam was seriously ill.
He was working on a building site when chest pains hit him. Surgeons diagnosed an aortic dissection – a tear in the biggest artery of the body.
He needed an urgent operation to replace part of the aorta and the mitral valve in his heart.
Medics suspected they knew what was wrong: a condition called Marfan Syndrome – symptoms of which include excessive height.
Stunned, Alan, 50, and Jane, 49, travelled through a UK airport terrorist alert to Liam's bedside.
As he recovered from surgery, doctors explained his old, carefree ways –playing football, messing with his mates – had gone for good and his lifestyle would have to change.
Alan explained: "Those doctors had saved his life. If he had been taken ill in the Outback he would have died."
"We knew he had a different life ahead. But he could have coped. He was fit, he was going to be all right."
At 8.30pm on the Saturday they said goodnight to Liam. He was tired, hot and needed rest.
At 4am they were woken by banging on their hostel door. Liam had had a seizure and was on life support.
Briefly they stood by his bed as doctors fought to save him. Nine hours later, on August 13, their fun-loving son was dead.
The family were devastated. In 1985, when Liam was two, he had helped his parents to deal with the cot death of his little brother Joe who died at just six months old.
Now they had to deal with the tragic death of their other son.
It was almost impossible to take in, Liam had always been fit and strong.
True, he had had all the normal childhood health problems, plus a few extra. And, of course, there was his height. None of it seemed to bother him, although as a teenager he was self-conscious about his pigeon chest and odd-looking feet.
"There's this picture of him on a lilo. He's about 17, he's looking great, like Jack the Lad. But he's got this drink, and he's holding it on the middle of his chest. It was just like him to hide his chest and feet in photos. But if you look at the fingers we now know they are classically Marfan," recalls Alan.
But doctors in England had said everything was fine and, until his trip to Australia, Liam had not been diagnosed with Marfan Syndrome.
Back home, Alan combed through Liam's medical records. A Marfan feature was present on almost every page.
At just two his prominent chestbone was first spotted. There was a string of visits to GPs and specialists, a battery of tests and X-rays.
At 17, a consultant noted his clawed toes and referred him to yet another specialist. Liam never showed up. "Perhaps he never got the letter. Perhaps he was sick of doctors," says Alan.
Alan contacted the medics who treated Liam. He asked: "Didn't you see what was going on?"
One paediatrician who saw Liam as an eight-year-old was amazed to hear how tall he had grown.
He told Alan: "You just can't get to be that tall in this country without considering Marfan."
Another doctor apologised to the family on behalf of the medical profession.
"I don't know if 'sorry' is what I want," said Alan.
"It's not a legal issue, it never was. These doctors were good people, with good intentions. We expected them to know.
"It's massively frustrating. As my son walked around the streets, I'm absolutely confident that somebody, somewhere, must have thought: That kid's got Marfan.
"They could have tapped him on the shoulder..."
Liam's ashes now lay scattered at his beloved Stadium of Light, but the legacy of Marfans still lives with the family.
All of them have been tested. Lucy, a student nurse, is clear, as is Alan. and Jane, but they are still determined to do all they can to boost awareness of Marfan Syndrome in memory of Liam.
Alan said: "He's not going to come back. But somebody may look at this article and see one of the symptoms of Marfan in a growing kid.
"They can mention it to doctors and get treatment so that someone else won't have to go through this."
"Look at his huge hands," Alan said to the doctor. "Are they supposed to be like that?"
The doctor smiled. "He's just a big lad," he said.
Delighted, Alan rang the relations. "Our son's got goalkeeper's hands," he told them.
Over the years doctors often commented on Liam's extremely flexible joints and his height. When he was five-years-old he reached 4ft 5ins; at eight, just over 5ft.
By the age of 21 he had reached 6ft 10 and was nicknamed "Crouchy" after tall footballer Peter Crouch, but no one knew that his excessive height was a symptom of a condition that would prove fatal.
At that stage of his life he had everything to live for – great mates, good job, close family.
An avid Black Cats fan, the civil servant played in a Sunday league team and never missed a Sunderland match.
He had a great zest for life and is described by Alan, a watch manager at Fulwell Fire Station, as: "A great kid, a wonderful man."
Like scores of other young Wearsiders the former Monkwearmouth School pupil wanted to explore the world and in November 2005 he waved goodbye to Alan, mum Jane and sister Lucy, now 20, to embark upon a dream backpacking trip.
But he would never return to the family home in Ullswater Grove, Fulwell.
On August 9 last year the family received a phone call that would change their lives forever.
It was from a doctor at the Royal Perth Hospital. Liam was seriously ill.
He was working on a building site when chest pains hit him. Surgeons diagnosed an aortic dissection – a tear in the biggest artery of the body.
He needed an urgent operation to replace part of the aorta and the mitral valve in his heart.
Medics suspected they knew what was wrong: a condition called Marfan Syndrome – symptoms of which include excessive height.
Stunned, Alan, 50, and Jane, 49, travelled through a UK airport terrorist alert to Liam's bedside.
As he recovered from surgery, doctors explained his old, carefree ways –playing football, messing with his mates – had gone for good and his lifestyle would have to change.
Alan explained: "Those doctors had saved his life. If he had been taken ill in the Outback he would have died."
"We knew he had a different life ahead. But he could have coped. He was fit, he was going to be all right."
At 8.30pm on the Saturday they said goodnight to Liam. He was tired, hot and needed rest.
At 4am they were woken by banging on their hostel door. Liam had had a seizure and was on life support.
Briefly they stood by his bed as doctors fought to save him. Nine hours later, on August 13, their fun-loving son was dead.
The family were devastated. In 1985, when Liam was two, he had helped his parents to deal with the cot death of his little brother Joe who died at just six months old.
Now they had to deal with the tragic death of their other son.
It was almost impossible to take in, Liam had always been fit and strong.
True, he had had all the normal childhood health problems, plus a few extra. And, of course, there was his height. None of it seemed to bother him, although as a teenager he was self-conscious about his pigeon chest and odd-looking feet.
"There's this picture of him on a lilo. He's about 17, he's looking great, like Jack the Lad. But he's got this drink, and he's holding it on the middle of his chest. It was just like him to hide his chest and feet in photos. But if you look at the fingers we now know they are classically Marfan," recalls Alan.
But doctors in England had said everything was fine and, until his trip to Australia, Liam had not been diagnosed with Marfan Syndrome.
Back home, Alan combed through Liam's medical records. A Marfan feature was present on almost every page.
At just two his prominent chestbone was first spotted. There was a string of visits to GPs and specialists, a battery of tests and X-rays.
At 17, a consultant noted his clawed toes and referred him to yet another specialist. Liam never showed up. "Perhaps he never got the letter. Perhaps he was sick of doctors," says Alan.
Alan contacted the medics who treated Liam. He asked: "Didn't you see what was going on?"
One paediatrician who saw Liam as an eight-year-old was amazed to hear how tall he had grown.
He told Alan: "You just can't get to be that tall in this country without considering Marfan."
Another doctor apologised to the family on behalf of the medical profession.
"I don't know if 'sorry' is what I want," said Alan.
"It's not a legal issue, it never was. These doctors were good people, with good intentions. We expected them to know.
"It's massively frustrating. As my son walked around the streets, I'm absolutely confident that somebody, somewhere, must have thought: That kid's got Marfan.
"They could have tapped him on the shoulder..."
Liam's ashes now lay scattered at his beloved Stadium of Light, but the legacy of Marfans still lives with the family.
All of them have been tested. Lucy, a student nurse, is clear, as is Alan. and Jane, but they are still determined to do all they can to boost awareness of Marfan Syndrome in memory of Liam.
Alan said: "He's not going to come back. But somebody may look at this article and see one of the symptoms of Marfan in a growing kid.
"They can mention it to doctors and get treatment so that someone else won't have to go through this."
3 comments:
Lucky for all of us too. I think what you say is wise, they might not know, good thinking.
Rups xo
whoa am I to understand from MarfList that you are no longer in Bolivia? Well here's to homesickness and all that. I went to the Marf.Conf. at Stanford in July; so weird to spend a weekend surrounded by people who look like us! (well a lot of 'em do anyways). Welcome home or to wherever you are!
Auntie Linka
http://marfan-syndrome-blog.blogspot.com/
On occasion I find other MSers and pass on my blog. Sometimes we not only look the same, but live and breathe many of the same things too.
P.S. I was in BA this past Christmas and loved it. It was amazing.
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