Dads ride to help kids with rare craniofacial conditions

Adrian Crookes, a Business Intelligence Manager at Oxford University Hospitals (OUH), will be one of a trio of dads to embark on an epic 260 mile cycle ride between England's four main specialist Craniofacial Units in July 2019.

Starting at Alder Hey Children's Hospital in Liverpool on Friday (5 July 2019), the intrepid team will cycle on to Birmingham and Oxford before finishing at Great Ormond Street on Sunday (7 July 2019).

The ride is being organised to raise funds for each unit and for Headlines, a national charity that supports families of those affected by craniosynostosis and other rare craniofacial conditions, as well as each hospital’s charity fund, including Oxford Hospitals Charity’s Craniofacial Fund.

Adrian, who has worked for the Trust for 19 years, will be joined by friends Phil Sutton and Lee Amey, as well as James Blanchard who has volunteered to drive a support vehicle.

They are all fathers who have children with rare craniofacial conditions who have had surgery and treatment at one of the four specialist centres over the years - and they want to 'give something back' for the exceptional care their children have received.

Adrian's daughter, 15-year-old Lucy, was born with craniosynostosis, a rare birth defect where the bones in a baby's skull join together too early. She has received treatment and care from the Oxford Craniofacial Unit since her diagnosis just after her first birthday.

At 17 months, Lucy underwent remodelling surgery to correct the shape of her skull and allow her brain to grow normally. Surgery was a success and Lucy, who has just completed her GCSE mock exams, recovered well.

Adrian said: "It will be 14 years in August since Lucy had her surgery, but during that time our gratitude and admiration for the team who did their amazing work on Lucy has not diminished.

"From a parent's perspective it was hugely reassuring to be looked after so well locally, in the city we lived in, knowing that other unfortunate families have to travel the length and breadth of the country to access such expert services. As a long term OUH employee, I feel privileged to work with such highly skilled colleagues who are respected across the country.

"All of us dads know how lucky our children have been to receive such amazing care and support from Headlines and the hospitals, so we wanted to give something back - even though, as middle aged dads, we probably should know better than to attempt such a mammoth ride.

"My family will be forever indebted to the Craniofacial team at the Oxford Children's Hospital, as well as the staff on the wards we have spent time on.

"The great thing about the Craniofacial team is that they have an open appointment system, meaning we can speak to a member of staff if we ever have any concerns about how Lucy is doing.

"As a parent we can't ask for anything more than that - it's been so reassuring, and they've been really good with us."

Lucy, who also had minor surgery in 2015, initially returned for six-monthly consultations with the Craniofacial team following her operation, before this was extended to yearly as she got older and, more recently, to appointments every other year. She hopes to be discharged by the time she turns 18 in 2022.

Lucy, a keen runner, said: "I've learnt a lot over the years about what happened to me and the care I received. It's also been really great to meet other children with similar conditions and make new friends through the Headlines activity weekends we go on, and I talk to lots of them regularly."

Adrian, Lee and Phil, who met and became friends through Headlines-run social events over the last few years, are expected to arrive at the Oxford Craniofacial Unit between 4.00pm and 5.00pm on Saturday (6 July 2019).

Adrian said: "Our cycling adventure has been a long time in the planning, and we're all now really looking forward to getting on with it. I am sure we will have fun along our journey, with good thoughts of why we're doing it to keep us going when our legs will be screaming to stop."

Lee's son Finlay is also receiving care at the Oxford Craniofacial Unit for Apert syndrome, a more complex condition of craniosynostosis. Finlay was featured in a three-part 2011 BBC documentary which focused on the Oxford Craniofacial Unit.

Kari Ashton, an Advanced Nurse Practitioner on the Craniofacial Unit, said: "We wish all three dads every success in their 260 mile cycle ride between the four Craniofacial Units, and thank them for raising funds for the units and for Headlines.

"Money raised for our unit will be gratefully received as it goes towards improved education, information, research and patient support."

The trio of dads have already raised more than £10,000 for their chosen charities, and hope to get close to £12,000 by the time they complete their ride. Just under £3,000 raised by Adrian from running the London Marathon in April is included in the total.

Anyone wanting to make a donation can do so via this website.

Pictured: from left: Lucy Crookes, 15, mum Nicola, dad Adrian and Holly, 13.