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Father and friends compete in tough triathlon to fundraise for sons’ rare condition

John and Donna Connett with their children Hayden, aged seven and Lewis aged seven months.

John and Donna Connett with their children Hayden, aged seven and Lewis aged seven months.

A determined father is fighting fit to fundraise for his baby son who was born with a rare genetic disorder.

Skircoat Green father John Connett, 40, competed in his first triathlon to raise money for Headlines Craniofacial Support Group and Alder Hey Children’s Hospital - organisations which will treat his seven-month old son’s Aperts Syndrome condition for the next 15 years of his life.

Baby Lewis’ skull, hand and feet bones are fused and at five months old he endured eight hours surgery and 60 stitches in a skull reconstruction operation at the children’s hospital.

Mr Connett said the affect of the condition is explained simply as his son’s head scaffolding not supporting his skull.

The rare disorder affects one in 65,000 babies and Mr Connett and his wife Donna, 39, believe their son, born at Calderdale Royal, is the first baby in Halifax to be born with Aperts Syndrome.

John was joined by five other Skircoat Green fathers Stephen Scholey, Nick Grice, Chris Johnson and Andre Stolarski, who all completed a 400 metre swim, an 18 mile cycle and a four mile cross country run to raise over £12,500 for their chosen charities.

To complete a triathlon was a personal ‘before 40’ goal for the father of two.

Mr Connett said: “The first few months after Lewis’ diagnosis were really hard for us but our friends, Headlines and Alder Hey have been a fantastic source of support. After Lewis was diagnosed it seemed like the right time with something personal to finally fundraise for.”

Mr Lewis said he now wants to educate people about the rare disorder.

“Lewis gets stared at and we don’t mind people asking questions as he does look different to what you call ‘normal’ children.

“But he is a content, happy chappy who never cries - we take our inspiration from him.”

 

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