The dad and grandfather of a little boy whose skull was removed and re-set due to a rare condition, are shaving their heads as a mark of solidarity.

When Kate Robinson, of Little Budworth, gave birth to twin boys Archie and Alfie in June 2012, the only minor concern she had was the tiny tag on Archie’s left ear, which he was sent to Alder Hey Hospital to have removed.

But once there, Kate and her partner Gary Evans were shocked to learn he had a rare condition called craniosynostosis metopic trigonocephaly, which meant his skull had fused too early.

The condition left Archie’s forehead shaped like a triangle, and he needed to undergo a gruelling 12-hour operation to reform his skull, which doctors had to literally remove, fix, and re-patch, leaving Archie with a prominent zig-zag scar from ear to ear.

The family were treated so well at Alder Hey that Gary, 25, and Kate’s dad Paul Gray, have now decided to fundraise for the hospital by having a ‘cranio haircut’ where they will have their head shaved in the shape of Archie’s scar.

This will take place at a fundraising event on September 27 at Delamere Community Centre, which will also feature a raffle with prices including a ride at Oulton Park, tickets to see Billy Elliott in London, face-painting and various stalls.

But Kate, 26, and Gary, 25, are relying on donations from local businesses who can add to their prize list, in the hope of raising money for Alder Hey and spreading awareness of the condition.

Little Archie Evans
 

Kate, who is also mum to Luke, eight, and Sam, four, told The Chronicle: “It was a bit like Humpty Dumpty – Archie had to be put back together again. His scar is very big but I think it’s fading already.

“As well as fundraising, we really want to spread the word about craniosynostosis as much as possible. It’s an extremely rare condition that affects one in every 2,000 children, and the reason we’re doing it now is because September is cranio-awareness month. If Archie’s condition had gone untreated, it could have resulted in raised intracranial pressure (ICP) and many other conditions later in life.

“He was extremely brave in what was such a gruelling operation and we are so very proud of him.

“He’ll be under the care of Alder Hey for many years, but we are very grateful to them so that’s why we want to raise as much as we can to help them,” she added.