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Life's a struggle but Sarah's still smiling
From the Swindon Advertiser, first published Friday 4th Mar 2005.
FOR six-year-old Sarah Hampton-Smith, life is a continual struggle to do what other children take for granted.
The Stonar School pupil suffers from Noonan Syndrome, a rare condition affecting her muscle mobility, and a heart defect.
Despite her problems, Sarah, of Castley Road, Hilperton, shows remarkable bravery, refusing to see herself as disabled and rarely complaining about her ailments.
Her mother Stephanie said her daughter was determined to live a normal life, despite coping with a condition which affects between one in 1,000 and one in 2,500 children worldwide.
She said: "What she lacks in physical stamina she makes up for in mental stamina.
"She doesn't see herself as disabled and doesn't want to be treated differently.
"She copes very well and she never tells anyone if she is in pain."
Sarah's joints and muscles do not function as well as they should, meaning she tires easily and will sometimes fall as her muscles give way.
Her heart muscles were affected by the syndrome and she underwent heart surgery when she was just 15 months old.
She has to undergo regular physiotherapy and is monitored by specialists at both the Royal United Hospital in Bath and Great Ormond Street Hospital in London.
Despite this the little girl takes tap lessons, has just started gymnastics and is doing well at school.
Mrs Hampton-Smith and her husband Stephen also have to cope with the health problems of their other child, 10-year-old Simon.
Simon, who attends Hope Lodge School in Southampton, has an enzyme deficiency that means he cannot be exposed to certain foods or chemicals, and suffers from autism.
He has no awareness of danger and, in terms of his social, learning and communication skills, has a mental age of six.
Mrs Hampton-Smith said: "It is an emotional rollercoaster. You get the highs and lows of their achievements and their disappointments. You are the one who always has to speak out for them."
Doctors have yet to discover a cause for Noonan syndrome. The family have no idea whether Sarah's condition might improve or worsen as she gets older but worries about what the future holds for their children.
"Simon will always need a carer. Even as an adult he will always need some sort of supervision," Mrs Hampton-Smith said. "Sarah hopefully won't need that kind of support but she will always have to be aware of her disabilities."
NOONAN Syndrome is often called `the hidden condition' because its effects may not be obvious to the casual onlooker.
The condition, which affects both adults and children, is often associated with congenital heart disease as well as a variety of other problems.
Those with the syndrome may have all the health problems associated with it or just one or two of the symptoms.
The genetic condition can affect growth, blood clotting and mental and physical development.
A child with Noonan Syndrome is born every day and has a 50/50 chance of passing it on to their own child.
The wide variety of symptoms means it is thought many people may have the syndrome without ever knowing it, and doctors have yet to discover the cause of the illness.
For more information about Noonan Syndrome visit www.noonansyndrome.org
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