Sam’s super fundraising story
20 June 2019
Super supporter and patient Sam has done some fantastic fundraising for the place he calls ‘his hospital’ to say thank you for the treatment and care Evelina London have provided him over the years.
Hear from Sam, his mother Jenn, and Emma, senior research nurse at Evelina London, who looks after Sam. And find out more Sam’s amazing fundraising achievements, including his impressive triathlon.
Sam is a typical nine-year-old. He loves sport - especially cricket, football and golf - and he enjoys seeing his mates and playing with his sister and brother, Issy and Alex.
He also has achondroplasia, which is the most common form of dwarfism.
As his mum, Jenn says though - ‘it doesn’t stop him from doing anything that he wants to do’. Go, Sam!
Sam showed this determination by deciding to fundraise for the place he calls ‘his hospital’ – Evelina London. And of course, sport loving Sam chose an active challenge and completed a triathlon - running, cycling and swimming to raise an amazing £4,250.
Achondroplasia is caused by a gene mutation which means that bones don’t grow properly.
This means that people with the condition have shorter arms and legs than most people. They are also usually smaller than average in height too. For example, Sam is shorter than his younger brother who is six.
Sam and Evelina London
Sam chose to fundraise for the hospital in thanks for the care he receives. He’s been part of a clinical trial at Evelina London to help him grow since he was six. Sam has an injection every day at home, which his mum gives him, as well as regular monitoring and tests at the hospital. And there have been brilliant results.
‘As part of the trial, we spent a year where Sam was being measured as a baseline to see how he grew without the drug,’ explains Jenn. ‘Now he’s measured since being on the drug, and we’ve seen him grow a lot quicker.
‘If you look at a child with achondroplasia and they’re reaching their arms up to the sky, their hands wouldn’t go past their head. But now Sam can clasp his hands above his head.
‘He can reach the countertop and get himself a drink of water, reach light switches, it makes it easier for his golf swing and the way he runs is improving.’
Evelina London’s achondroplasia clinic
Sam is treated at the achondroplasia clinic at Evelina London, which means all the specialists that patients need are in one place. It’s made a huge difference for Sam and his family, who used to have to go to appointments all over London.
‘When I first had Sam, I was working three days a week and trying to fit all the doctor’s appointments into the other two days. Sam only saw me when we went to the doctor, and the other kids didn’t see much of me at all.
‘When we started going to the clinic at Evelina London, it was revolutionary for us. Having all those specialists communicating to one another in the room and formulating treatment plans, as well as the emotional support they offer, really is amazing.’
The clinic also helps connect families with children who have achondroplasia, to help them share the experiences of the similar journeys they are on. Jenn thinks this will be particularly important for Sam as he gets older.
‘Sam would rather have achondroplasia than not, he likes being different, and he likes being special, and long may that last,’ she says. ‘But he is becoming more aware of his differences and some of the limitations of being small and he’s starting to feel some frustration at that.
‘So, as he approaches adolescence, it’s going to be so important that he has that community of people who understand what he’s going through, so that they can support each other.’
Sam’s triathlon consisted of a 200-metre swim, a 3km cycle and a 1.2km run. He took on the challenge last October for Dwarfism Awareness Month and plans to do more fundraising again this year.
‘I think if we can all do a little bit more, we can make it so much better for the children’s experience on a day-to-day basis,’ says Jenn, ‘such as help get more things like the toys in the reception or new equipment.
‘We see that the staff are all going above and beyond for Sam and all of their patients, so Sam’s fundraising is to say thank you to them as well.’
You can become a fundraiser like Sam and help raise money for Evelina London in our special 150th birthday year! Find out more about how you can get involved.
Lead photo: Sam cycling through the park, training for his triathlon.