Jack Thomas, from St Athan, suffers from a unique mutation of the PPFIPP1 gene, which causes drug-resistant seizures, developmental delays, and blindness.

The condition is so rare that it does not have a name, and Jack is the only known patient in the UK, with only 15 other children diagnosed worldwide.

His mother, Amanda, said: “Jack is so special.

“He has overcome so many odds since his birth, and we are so grateful for each day we have with him.

“When you have a child with a serious health condition, it is such a worry and reassuring to know that Wales Air Ambulance is there if needed.”

The family have pledged to raise as much as they can for the Wales Air Ambulance.

She said: “We are just so grateful for everything the service has done for us over the past few months.

“It’s important for us to give back as much as we can.”

Jack has needed the service’s help multiple times, after suffering prolonged seizures.

Jack's family raised almost £1,000Jack’s family raised almost £1,000 (Image: Wales Air Ambulance)

The Welsh Ambulance Service has attended to Jack on eight occasions since September last year, and Wales Air Ambulance clinicians provided support to ambulance crews on three of those occasions.

He has spent more than 60 nights in hospital since his birth and needs care 24/7.

To raise money for the service, Jack’s parents organised a Coffee and Cake event in March for the charity’s 24th anniversary.

Ms Thomas said: “Our brilliant family and friends all pitched in.

“They were baking, making cups of tea and coffee, and helping on the day.

“We managed to raise almost a thousand pounds, which is a fantastic amount.”

Gail Windley, regional fundraising manager for Wales Air Ambulance, said: “It was wonderful to have the opportunity to meet the Thomas family after their incredible Coffee and Cake event in aid of our lifesaving service.

“We are hugely grateful to Amanda and Nick for raising funds for us during what has been an incredibly difficult year for the whole family.”