Growing up with Noonans has affected Richard Allsopp’s education, social life and achievements.
But he’s gone through mainstream school, completed a degree, enjoyed a varied career and lived on his own for many years.
Here’s his story.
Richard is the third of three children – two older sisters and one younger one too. His Noonan Syndrome gives him the familiar characteristics of curly hair and low-set ears rotated back plus heart problems; his first surgery was at just eight weeks old. Richard has since had further heart surgery in 2010, plus numerous cardio-versions and catheter ablations.
Growing up, Richard, now 41, wasn’t treated any different to his sisters and they didn’t consider themselves to have a disabled brother on account of him being able to do most of what they did.
The only thing he remembers not doing was running around the playground, after his friends or for PE at school.
His curly hair was useful for his sisters though – they used to like resting their feet on it; something all the siblings remember including his sister Sharon – whose story you can also read.
He said: “I loved primary school. I had some great teachers and brilliant friends. I got on well, sometimes took a little longer to pick things up but I got on with it and was very well-supported.
“Secondary school was a little different – I got into a few fights defending myself from a handful of other pupils and the teachers realised I was better at helping out at PE than actually doing it so I carried equipment in and out instead.
“I finished school with C grades and went to college because I wasn’t allowed back into 6th form, so I did a BTEC in IT.
“I had a really good time at college and met my best friend Graham there. We’ve been friends ever since and I was best man at his wedding.”
After college, Richard wanted to put his education to good use – and got his first job, with Learn Direct helping people to get ready for work and find a job.
Richard worked across different centres, managing two of them before his heart problems were causing him to take time off for appointments and recovery, and so he stepped away from management and back to tutoring, which he had always loved.
He said: “I’d always enjoyed tutoring and being able to help people to learn new skills and get their English and Maths exams to then have a chance at the job they wanted, so tutoring was brilliant.
“I worked with some great people and had fantastic bosses who were understanding of my health issues and were supportive if I needed to go to an appointment or be off.”
Richard now works with young people in care, giving one-to-one tutoring.
“Not disabled enough.”
Richard was made redundant from his tutoring job when the company made big cuts across the country and it took Richard eight months to find a new one.
But at the same time, his disability allowance had been reviewed and reduced, because he wasn’t deemed to meet the criteria. His Motability car was returned and he was almost in the position of having to give up his flat too and going back to live with his parents.
Despite a lifetime award for the disability allowance because his condition wasn’t going to go away or get better, the decision was made to remove it from him – but one tribunal and two appeals later, he had it overturned it, had the missed payments backdated, his car returned and was back into the job he loved.
He said: “It was a hard time but I was going to fight it so that I could keep my car and flat – I didn’t deserve to have the allowance taken away and that’s what was said at the third tribunal.
“One of the panel was familiar with Noonans so I felt there was understanding of my condition and life.
“It was so expensive – it would have been cheaper to have just left it as it was.”
Richard’s overall health has been good since 2010, however over the past year, his heart valves have started to leak more and his Lymphoedema (which started in summer 2018) has started to affect him more – he has difficulty with breathing and walking. Richard now has problems with his Lymphatic system, causing Lymphoedema in his ankles, legs, knees, and thighs and is waiting for further intervention, such as either another catheter ablation or valve replacement. This recent downturn in his health has meant that he still has to have regular appointments for his heart every six months in Bristol.
He said: “I do what everyone does – keep the niggles to myself but my sisters in particular always tell me off because they want to know all of the small stuff and I am getting better at telling them – they always want what’s best for me!”