Dad Joe gears up for 300-mile cycle

He's taking on the challenge after his two-year-old son Louis had skull reconstruction at GOSH in May 2019.

Making a difference

“One thing I would say is that the work Great Ormond Street Hospital (GOSH) does is life-changing. Everything they do makes a huge difference to children’s lives and it’s somewhere that is very close to our hearts now.” 

Dad Joe is gearing up for a 300-mile cycle ride from London to Paris to raise vital funds for Great Ormond Street Hospital Children’s Charity (GOSH Charity). He is taking on the gruelling challenge as a thank you to GOSH after his two-year-old son Louis underwent skull reconstruction at the hospital in May 2019. 

The operation – led by the craniofacial team – was successful, and now Joe hopes by taking on the cycle challenge he can raise awareness of Louis’ condition, craniosynostosis. 

“Louis is a really happy and intelligent little boy,” says Joe. “He loves spending time with his friends, and he loves cars and dinosaurs. He’s a real outdoor child – he loves exploring and playing outside in the mud and jumping in puddles. He’s just like any normal two-year-old."

Louis' diagnosis

“When Louis was born, my wife and I noticed that he had an unusual lump at the back of his head. We were told we’d see his head shape change over the coming weeks and months. 

“When Louis was 14 months old, we were back in hospital as part of an emergency admission for an unrelated illness and one of the consultants noticed his head shape. This was the first time we heard of the condition craniosynostosis.” 

In January 2019, Louis was diagnosed with sagittal craniosynostosis. The condition means that the several ‘plates’ of bone which make up the skull are fused together before birth. Normally, these would fuse gradually over time after all head growth has finished. The condition can cause speech and language delay as well as raised intercranial pressure, as the skull does not provide enough space for the growing brain. 

In shock

“We were very upset,” says Joe. “As a family it was a shock because you looked at Louis from the front and you wouldn’t think there was a problem. You have a denial stage where you’re thinking, 'he can’t need surgery'. After it has sunk in you realise you have to do what’s best for your child. 

“Fortunately, Louis didn’t have any issues with intercranial pressure, his sight or development, which can happen with this condition – but it could have happened at any time.” 

Coming to GOSH

Louis’ operation took place at GOSH in May 2019. 

“After seeing Mr Jelani and Professor Dunaway, it really put us at ease”, says Joe. “GOSH has been superb – the consultants, the nurses, everyone. They have been extremely supportive and explained everything to us in lots of detail. 

“My wife had a lot of questions over the period of time – the two consultants were quite happy to explain everything in simple terms that we could understand. They really made us feel at home and we knew it was more than a job for them – you felt their passion about helping children. That's so important. Louis was very at ease with Mr Jelani and Professor Dunaway. He had a trust in them.

“For families that have this kind of experience, hospital can be a scary environment. Louis is our first child and we were driving down from Ely to London for his appointments and a couple of times we had scary moments where you thought to yourself, ‘What’s going to happen, what are they going to tell us?’” 

Successful operation

Louis’ operation was successful and now he has check-ups at GOSH every six months to monitor for intercranial pressure in his head and his sight. 

“Since he’s had the operation, he’s been a little superstar,” says Joe. “He’s adapted really well. He has a scar from ear to ear across his head but now his hair has grown back – if you looked at Louis today, you would never know he’s had the operation. There’s a small chance he may need another operation in the future, but so far everything is great.”

Help from the Play team

While Louis was at GOSH for his surgery, he benefited from the Play team, which is funded by GOSH Charity. 

"The play team came over to see Louis and gave him toys – they were so kind and supportive,” says Joe. “When you’re in this position you’re on edge all the time, but every single person really looked after us. 

“We wanted Louis to have the best start to life, like any parent. As a family we are really into sport so it was one of the questions we asked at the time at GOSH: ‘will he be able to play contact sport?’. 

“After his surgery, one thing they said was that he would lead a normal life. We want him to have the option to play sport and GOSH has given him that opportunity to do that.” 

Rapid fundraising

Joe has already exceeded his £5,000 fundraising target for GOSH Charity, having raised more than £2,700 in a single week. He hopes to raise in excess of £10,000. 

His training has now begun, and he plans to cycle regularly on the road and in the gym to improve his stamina in the lead-up to the event in June 2020. 

“We are very proud to raise money and provide support to GOSH Charity,” says Joe. “Louis has a Team GOSH Fund now and we are planning on doing lots of fundraising. As a family we want to give back as much as we can and cycling for four days is the least I can do!”.