Growing up with a brother with Noonans
Sharon Allsopp, our deputy chair was four years old when her brother Richard was born. He was the third to be born to their parents and having had two healthy girls, they assumed their baby boy would be the same.
But as soon as he was born, doctors realised he had a heart condition – and with tests and scans not what they are now (this was 1978!), his condition wasn’t known about until after he was born.
At 8 weeks old, he was the youngest ever patient to have heart surgery at Bristol Hospital and with a 20% chance of survival and the risk of brain damage, his parents could only hope for the best for their tiny little bundle.
He was to spend most of his first four months in hospital, whilst his elder sisters Sharon and Marie were sent to live with their grandparents up the road – which Sharon looks back on fondly.
She said: “When Richard was born, I was four and Marie was two. Because he was in hospital, we didn’t really see him until he came home but we were having a lovely ‘holiday’ at my mum’s parents’ house up the road.
“Mum has since told me that they had originally thought the heart surgery would be all he needed, but as he started to grow, he wasn’t putting enough weight on or making the milestones which she had seen us two get to.
“When he was seven months old, she knew something was wrong but the health professionals around her didn’t know what to do for her – nobody knew what to do with him.”
As he grew, his development was very slow – when she compared him to her girls:
9 months – lifted head
12 months – rolled over
13 months – crawled
16 months – sat up
18 months – walked
2 years – talking
It was when he was two that he was taken to the dentist with swelling in his mouth, which turned out to be tumours which, with his new teeth he had bitten into and made bleed.
They didn’t know it then, but part of his Noonan Syndrome is a lack of clotting agent in the blood, and so a trip to casualty turned into an operation to remove his back teeth – from the second lot, before the first had even grown through.
He was diagnosed with Noonan Syndrome around this time from a text book – none of the medical professionals had known what it was but his symptoms matched what the book said.
And that was as far as it went – there was no advice on managing the condition at home, just a reactive service to any health issues that cropped up.
A Happy Child
Despite the care, health checks, hospital stays and fuss, Sharon always remembers Richard being a happy child, whose curly fuzzy hair was great for resting their feet on and tickling their feet with!
They treated him as just one of the gang – and so did their final sibling Kelly when she came along four years after Richard.
He sailed through primary school – after their mum won a fight to send him to the same mainstream one as his sisters, having been told he should be at a special school.
Sharon said: “There was nothing wrong with his brain – by four he could tell you the make and model of any car he saw! Mum, who was threatened with prison for not sending him to school, told them that places at the specialist school should be taken by those who needed them; Richard wasn’t one of them!”
Senior school was a different matter though – bullied for being different in look, his sisters saw him left on his own at break times and tried their best to protect him.
He left at 16 with seven GCSEs at C+ and above (for those of us old enough to remember that grading system!), then went onto college for a GNVQ in IT, followed by a degree in IT & multi-media.
He learnt to drive, got a mortgage for his own house, found a job and became a Maths and English tutor for those looking to get back into work post-prison or unemployment.
Although the family worries about him, he was off leading his life and always had them for support should he need it, although usually it was only for medical issues.
A redundancy at the job he loved left him cast adrift for a few months, with recruiters and employers unable to see past his Noonan characteristics which led them to assume his brain wouldn’t be as good as the next candidate, something Sharon is still angered by.
“Society is prejudiced – and many employers were seeing the disability, not the capability. It was a really rough time for him, because without a job, he wasn’t able to afford his car or home.
“At the same time, he was told he wasn’t ‘disabled enough’ to qualify for disability allowance for his car – but he appealed, won and had his money backdated and rebated, plus he got a new job too.”
Disabled but not incapable
Sharon has never thought of her brother as disabled – “he’s just Rich” – she says.
He’s gained a degree, done well at work, enjoys hobbies and has lots of friends too. Noonan Syndrome has never stopped him from doing anything he’s wanted to.
He’s living on his own, manages his life and does his best to manage his ongoing health conditions although this can sometimes bring its challenges.
Sharon said: “Richard is living as normal a life as he can – he’s happy and whilst he knows he has more surgery in the future and is on daily medication, he just gets on with it.
“We wish he’d let us know about some of his health issues as they arise rather than when they’re a little more serious, but we’re working on him!”
NSA Deputy Chair
Sharon became involved with our charity because of her brother, to meet other families and also to become involved with research and understand more about Noonans in adulthood.
She also runs a local group and organises fundraising events near Cheltenham where they live, for other families affected by Noonans to meet, share and help each other.