A father has walked 100km in 24 hours from Putney to Henley to raise awareness for a brain condition that affects one in 2,500 – including his nine-month-old son.
Anthony Mackey, 38, completed the challenge last month with his three brothers and five friends after his son Téo was diagnosed with Sagittal Craniosynostosis in June.
The condition occurs when the plates in a baby’s skull fuse too early, restricting normal growth and putting the child at risk of many severe complications.
Surgery is the only option for Téo and a CT scan, due to take place later this month at Oxford’s John Radcliffe Hospital, will reveal its urgency.
Anthony said: “When we first found out about Téo’s diagnosis, I felt very helpless.
“It might be male bravado, but I felt like I was meant to be the one protecting my family, particularly my children, and I couldn’t on this occasion.”
It was Anthony’s wife Marianne, 31, who suggested the fundraising walk, inspired by her husband’s lengthy lockdown strolls with Téo, who struggles to sleep as a result of his condition.
Anthony explained: “The 100km walk helped me regain a sense of control over the situation.
“It was also a chance to give back to the charities who have guided my family through this terrifying time.”
The couple, who live in Eton-Wick, Berkshire, initially set a target of £5,000 but have since raised over £16,000.
Most of the money will go to Headlines, a charity which supports those affected by Craniosynostosis and helped Anthony, Marianne and their eldest son, Tom, 4, understand Téo’s rare condition following his diagnosis.
The charity also sent matching toy bunnies to Tom and Téo, so that the two can remain connected during Téo’s operation.
Anthony said: “The generosity has been incredible – even through the night as we were walking, people from across the U.K. were donating on GoFundMe and sending messages of support.
“It was a massive motivator for those of us completing the walk.”
The family has also received support from the local community.
The restaurant Dan’s Kitchen, based in Buckinghamshire, delivered a breakfast to the group at 7am, while Anthony’s father, Tony Mackey, 62, set up a welfare truck with supplies and water and met the troupe at various stop points along the way.
Anthony, a private tutor at the London Academy of Music and Dramatic Art, completed the walk with sons Téo and Tom, who had been waiting at the finish line with mother, Marianne, a dance teacher.
Anthony admitted: “It was a very emotional moment as there are so many potential negatives to focus on in this situation, but as a family we try to channel Téo’s positivity.
“He’s such a happy little boy, and it sounds a cliché, but if you could see the world through his eyes, every day is a gift.
“That’s the attitude we try to maintain as a family.”
For more information, or to donate, visit: https://bit.ly/3noIOUM
