This is our little boy Louis, who has Down’s Syndrome, volunteering at Peterborough parkrun and giving one of the runners a ‘high five’. For us however, the photo has great poignancy as the woman is not just any runner – her name is Dr Yong and several years ago she saved Louis’ life.
Louis is a twin. He has a twin sister called Lexie who is two minutes younger than him although all who meet them think that Louis is Lexie’s little brother. They were due in February 2009 but were born at the beginning of December 2008. The fact that they were born so prematurely meant they needed to spend the first seven weeks of their lives in hospital.
The first three of those weeks were spent in intensive care and they had a single specialist nurse with both of them at all times. They were incredibly small (2lb 5, Louis and 2lb 13 Lexie) and took many months to catch up. Louis, though, also has Down’s Syndrome. More of his health implications now are as a result of him having DS – not his prematurity (which affected him in the first few years).
The woman Louis is high-fiving in the photo above, Dr Yong, was his NHS paediatrician. Dr Yong looked after him in the Special Care Baby Unit during his very first hour of life and she cared for him whilst he was in intensive care for the the first few weeks of his life. She’s been his paediatrician ever since. For nearly 10 years now, she’s seen Louis regularly and tended to his (sometimes complex) health needs.
Louis has a Ventricular Septal Defect in his heart (basically a hole). He also has poor circulation, hyper-thyroidism and many other bits and bobs. He has very significant learning disabilities. But he is also the happiest and most sociable child you could ever possibly meet.
By the implication of the conditions Dr Yong has managed through the years, she has probably saved Louis’ life a number of times, but specifically when Louis was four weeks old, he contracted a severe chest infection and stopped breathing. Only the quick thinking of the ward sister and the doctors on duty that evening (one of whom was Dr Yong) saved his life. His condition was very serious indeed and he had to be ventilated for 48 hours.
My advice for other parents who were/are in a similar situation to us – both having a premature baby and also having a child with a disability – is to take one day at a time and (even though it can be stressful) enjoy the experiences you have. It is one of the most magical and happy times of your life and neither one of these things need change that. I’d also say (and although it’s convenient for me to say it for the purpose of parkrun/NHS70, I really, really mean it), trust in the NHS and the brilliant people who are going to look after your child. When you are in that situation and you sit there looking at your child connected to machines, tubes and wires, you feel anxious, but I remember far more a feeling of absolutely awe of the care that they were receiving. There is no other organisation that we have that has the resources and talent to do what the NHS does.
The effect on Louis and our family of our involvement in parkrun has been profound.
I started parkrun in February 2017 as I was training for a triathlon to raise funds for Louis’ charity. In my mind I was the least fit person on the entire planet and myself and Louis’ twin, Lexie, decided to have a go at parkrun and we got round in an (all ran) 38 minutes, which we were very proud of. Louis and his mum came and watched and cheered us on and, after a few weeks, he started begging us to take part. He completed the distance three times in a best time of just over an hour. Apart from the Tail Walker, he was the final finisher every time but he absolutely didn’t care. He behaved like he’d won. In his mind and ours he had won.
The last time he ran the distance, as he was coming up to the finish line, hundreds of people who were all gathered were cheering for him to finish and clapping and calling his name. It was quite moving; I don’t mind admitting to having had a lump in my throat.
Louis has made loads of friends at Peterborough parkrun and although it was just too much for him to take part regularly as the distance is too much for him, he has continued to be involved, both watching regularly and volunteering several times. He has become a bit of a celebrity there. Most people know his name and give him high fives as they go past him. Although he can’t take part in the 5k any more, happily we now have a junior parkrun event that Louis and Lexie can take part in. In fact, Louis was incredibly honoured to be the starter at the first ever Peterborough junior parkrun.
“He came dead last every time but I absolutely didn’t care. He behaved like he’d won. In his mind and ours he had won.”
For me personally, parkrun has transformed my fitness. I’ve now taken part in 40 parkruns having literally never run more than 10 metres in my life 18 months ago. I’ve lost two stone and at the age of 42 I am easily the fittest I’ve ever been. Far more importantly than that from my point of view, it has given both me and my wife (who is also a parkrunner) the opportunity to show both of our children that it is important to take part in activities that will positively impact on their health. They love exercise now and have, since we begun parkrunning, got involved in all sorts of sport including running, Taekwondo and gymnastics.
Most importantly of all, parkrun has just been a lovely thing to be involved in. We have found the parkrun/running community to be absolutely wonderful. Everyone is so supportive of each other, from the guy who finishes first at our parkrun most weeks (who Louis had a great photo taken with) to the people right through the field and those who volunteer. Everyone has been so friendly and are just lovely with Louis.
Last year we were lucky enough to meet parkrun’s Founder, Paul Sinton-Hewitt CBE, who came to our parkrun for its fourth birthday, We found Paul to be every bit the person we were hoping he would be. He’s absolutely charming and a proper hero. We captured that moment on camera, and it’s now one of a growing album of photos of Louis at parkrun that we will treasure forever.
Chris Baldwin from Sixfields Upton parkrun joined the parkrun 50 Club at the weekend. He has achieved 11 PBs on his way and reduced his time from 56 to 31 minutes – all whilst undertaking and recovering from chemotherapy. This is Chris’ story… It started as a cough that I just dismissed, but as time went on the…
My name is Michelle Rivett, and I have a connective tissue disorder called Ehlers Danlos Syndrome (EDS). My condition is progressive and can be difficult to treat, it is regarded as a rare disease. Clinicians would categorise EDS as a type of musculoskeletal (MSK) condition of which there are many different types such as osteoarthritis,…