The father of a baby girl born with an extremely rare life-threatening condition has set out on a 725km cycle from England to Donegal to raise awareness of the illness.
George Rockell, 35, chose to embark on the ten-day bike journey from Somerset after his daughter Alannah was born with the rare condition called OA/TOF which leaves babies unable to swallow.
When Alannah was born in March, five weeks early, she was diagnosed with the condition that affects only 1 in 3,500 babies.
After she was born, she was rushed from the Royal United Hospital in Bath, England, to University Hospital of Wales in Cardiff for life-saving surgery.
At just two days old, she underwent major surgery to separate her trachea and oesophagus so that she could swallow. The surgery was successful but Alannah faced an intense recovery.
Her mum Emma, 35, from Milford in Co. Donegal, and dad George had to quickly learn everything they could about a condition few people have heard of. The experience motivated George to take on the epic cycle.
Emma said: ‘George had just seen Alannah’s journey and what I had to go through, and he really wanted to do his part to give back.’
George is raising money through the cycle for the charity TOFS which supports people with the condition and their families throughout their lives, and he has collected £5,000 (€5,845) so far, which has been a huge support for the couple.
Emma said: ‘It’s really overwhelming, the generosity of everyone. They have put us in touch with other families with TOF. Their book has been a bible to us in explaining the condition. We read that when we were in hospital to prepare us for what we were coming home to.
‘All of those have been so much help to us because it’s just not a condition you’ve ever heard of.’
They hope the money will raise awareness of the condition, fund more research and support people and families affected by OA/TOF.
Alannah’s early days were scary for the new parents. After an emergency C-section, Alannah was immediately put into intensive care. Emma said: ‘It’s very hard because you’re not able to hold your baby. It was just a surreal experience and we were just hoping for the best because, you know, it’s surgery on a newborn.
‘She was only four pounds because she was so premature. It was a big surgery on somebody so little. It was very worrying.’
After her surgery, Alannah was placed under sedation for five days. She was then on ventilation for nearly four weeks and was tube fed for five weeks.
Alannah is now recovering well and Emma and George say it is largely thanks to the medical care she received.
‘She’s just thrived,’ Emma said. ‘She got such good care and everyone just says she must have had the best surgeon ever because she had a very tricky repair. Although it seemed, on paper, at the beginning that she had a very tough journey, she’s absolutely fine.
‘I think a lot of children have a much tougher route.’
Now on day five of his journey, George is enjoying his time on the road. Emma said: ‘He already wants to do it again. It’s just beautiful countryside, and there is a lovely cycle path network that he’s using.
‘He’s staying in some nice hostels and quite interesting ones.’
He spent his first night in St Briavels Castle, often called the most haunted castle in England. George expects to take the ferry to Ireland on Wednesday and then make his way across the country to reconnect with Alannah and Emma in Donegal on Saturday.
