I’m running for Alfie who has undergone 20 operations
A Rhondda Dad – whose son was born with a rare condition which affects various parts of the body – is gearing up to run the Principality Cardiff Half Marathon in aid of Noah’s Ark Children’s Hospital for Wales.
It was at a 34-week growth scan that David and wife, Sarah, discovered that Alfie had abnormalities and once born, he was diagnosed with CHARGE syndrome which affects around one in 10,000 babies. He has since undergone around over 20 operations for various conditions in different parts of the body.
CHARGE syndrome affects multiple parts of the body and is an acronym that stands for: coloboma (eye), heart defects, atresia choanae (nasal), restricted growth, genital abnormalities and ear abnormalities.
The syndrome varies in severity but, for Alfie, who is now eleven years old, it has affected all aspects of the condition. Alfie even underwent surgery to his oesophagus when he was just three days old:
“Alfie was born a couple of weeks early by caesarean and we spent the first ten weeks in hospital. We discovered that part of his oesophagus was missing so he needed an operation to sew it together. Then every month for around a year, he needed follow up surgery to stretch it while he grew. It meant that we spent a lot of time at Noah’s Ark.”
David spent those early weeks in hospital with Alfie while Sarah looked after their eldest son, Finley, who is now 14, at home in Treherbert.
Alfie also had heart surgery when he was just seven weeks old. His doting Dad describes him as small for his age:
“He’s 11 now but he is the size of a six- or seven-year-old. We also have a nine-year-old daughter called Daisy, who towers over him. He also wears hearing aids and the abnormalities to his ears affect his balance. He cannot walk unaided so he uses a walking frame and a wheelchair.”
He also has a PEG in his tummy – a gastrostomy – as he struggles to swallow:
“He’s nil by mouth so he’s fed by a gastrostomy tube into his tummy. Alfie is also non-verbal so it can be difficult when he is in pain and he can’t tell us what’s wrong.”
Alfie was also born with a cleft lip and palette:
“He did look quite different, I suppose, before he had corrective surgery to his face and there were times when we’d walk him in his pushchair and adults would stare and point. It’s all a bit unpleasant but it just shows a real ignorance on their part and fortunately, there are more good people out there than ignorant.”
David and Sarah were really impressed by the cleft lip surgery provided to Alfie:
“The surgeon and everyone at Cleft Lip and Palate Association were absolutely amazing and they’ve also provided so much help and support over the years.”
Alfie attends Ysgol Hen Felin and the family receives funding for a carer who helps a few times a month. It’s a juggle with David working full-time as a Payroll Manager and Sarah working part-time as a nursing assistant.
This year’s Principality Cardiff Half Marathon takes place on Sunday 1st October and is set to raise once again more than £3 million through partnerships with over 90 charities. 27,500 runners have signed up to be on the start line and will celebrate the 20th anniversary edition of the race.
It is the seventh time that David will have taken part, and each time he has raised funds for Noah’s Ark:
“We’ve spent many weeks at Noah’s Ark and Alfie’s always had really good care there. The nurses and doctors have been amazing so the charity is really close to our hearts – but not just for Alfie, but for all the work they do for thousands of families.
And David says that people point and stare at him for all the right reasons on race day:
“I tend to dress up for the occasion. I’ve run it wearing an inflatable suit and everyone’s pointing and laughing. The Cardiff Half is always well supported. It’s so friendly with a great atmosphere.”
As part of its title sponsorship agreement, Principality Building Society has teamed up with Run 4 Wales – the organisers of the Cardiff Half – to launch the “Healthy Habits” campaign. It aims to encourage people to adopt physical, mental and financial habits.
Adding to the event’s international appeal, it is now a part of the SuperHalfs – an international half marathon series including races in Lisbon, Prague, Valencia, Copenhagen and Cardiff. It challenges runners to complete the five race circuit in 36 months in order to earn a ‘SuperMedal’ and other exclusive prizes.
You can donate to David JustGiving page at David Llewellyn is fundraising for Noah’s Ark Children’s Hospital Charity (justgiving.com)