Dorset dad raising awareness of sons’ rare condition

Prior to the Covid lockdowns in 2019, Ben Carter found out his eldest son, Noah, now 13, had a rare medical condition known as congenital adrenal hyperplasia (CAH).

He then tested his two sons for the hereditary disease. His youngest son Quinn, now almost five, was also diagnosed with the condition, whilst Joss, now 11 was confirmed as a carrier.

Noah, Quinn and Joss Carter (Image: Ben Carter)

The condition prevents the adrenal glands functioning correctly and to stay healthy, people with CAH must take daily life-long medication.

The condition means they are at risk of a life-threatening adrenal crisis in an emergency - for instance if they are ill or injured. 

Ben, who runs the Brewers Arms in Martinstown with his wife Leanne, said: "We found at just before lockdown that Noah had it. The timing was good I guess with the lockdown so we were able to deal with it behind closed doors.

"They will have it for the rest of their lives and are on medication three times a day."

Ben Carter outside the Brewers Arms in Martinstown (Image: Ben Carter)

Upon hearing about the condition of Ben's children, Steve Howard, a friend of the publican started talking to Ben about doing a challenge to help raise awareness for the condition.

And now, the 59-year-old from Poundbury will be cycling 1,100 miles to each first-class cricket ground in England and Wales to raise awareness, and hopefully some money.

The choice to cycle to each of the cricket grounds was because of Noah's passion for cricket, playing for Dorset, and he is captain of the Martinstown under 13s.

Ben added: "I was really touched by Steve's offer to raise awareness - he was not aware of the condition - like many people.

"The ultimate goal for us is to have the condition recognised more, nationally, and the emergency injection Noah has to take needs to be made easier.

"There is a long process to use it, and when I am in a panic I am not sure how I would cope.

"So, if big pharmaceutical companies noticed it is a matter of urgency and made an epi-pen style injection that would be good."

Steve Howard from Poundbury has completed many endurance challenges including riding solo across the US and running in many ultra marathons across the world. (Image: Steve Howard)

Steve's bike ride will begin at the Brewers Arms on August 1 before he sets off on a 16-day round trip.

Steve said: "The main reason behind this is Ben is a friend and his kids have this problem so we had a chat and he said we should go to cricket grounds. 

"I like these sorts of challenges, I have done some quite big ones.

"It is to raise awareness of the condition primarily and secondly hopefully raise a bit of money for the charity."

Steve has undertaken many ultramarathons and bikes rides across the globe and says that this challenge will be 'two or three times harder than any of them'.

He added: "It is not the distance, but the route that is challenging, being in urban areas.

"To the uninitiated it doesn't sound a lot, but I know It will be difficult."

A JustGiving page has been set up with a target of raising £1,000.

To donate visit www.justgiving.com/page/raising-awareness-of-cah