This Wingerworth teenager is to cycle 30 miles to raise awareness of his dad's rare incurable condition
A Wingerworth teenager is to cycle 30 miles to raise awareness of a rare incurable condition which his ‘one in a million’ dad has.
Hulainn Ravey, 15, is to ride 30 miles for his dad Steve, 49, who has a rare immune deficiency condition called X linked Hyper IGM syndrome and was told he would not live past the age of 30.
Steve is thought to be one of the oldest men living with the condition in the UK, which affects around one in a million people.
The Tupton Hall pupil will complete the cycle on May 19 in a bid to raise funds for The Hyper IGM Foundation and Primary Immunodeficiency Association.
Hulainn’s mum, Kerry, 41, said: “We are incredibly proud of Hulainn. He got a new bike for his birthday and said that he wanted to do something for his dad. He wants to raise money so that research can continue and more and more children can be treated.”
Steve has had the genetic condition since birth and had bravely continued to live a happy life.
His condition means he is very susceptible to infections and colds and so has to be very careful when he is going to different places.
Unfortunately his health has become more challenging in the last eight months.
The day before his cycle ride, Hulainn will have a stall at the Wingerworth Family Fun Day where he will be offering free safety checks for bicycles.
On the cycle day he will be riding 30 miles from Wingerworth taking him through the likes Kelstedge, Ashover and Hasland before returning to Wingerworth.
Hulainn’s younger brother, Ffionn, 10, will be cycling the last couple of miles with him to complete the route.
“Our boys are our world and they have both taken Steve’s condition in their stride,” Kerry said.
Steve said: “I’m so proud of Hulainn taking on a challenge to help other people who suffer from immunosuppression. It means a lot to me that he has chosen to do this for this great charity.”
And Hulainn said: “I really look up to my dad and how he has coped having such a rare condition.
“I wanted to do this to show my respect for him, and hope the money I raise helps a little towards children getting help they need.”
Hyper IgM Syndrome is a very rare, one-in-a-million, and potentially life-threatening genetic mutation that severely compromises the immune system.
To find out more information about The Hyper IGM Foundation and The Primary Immunodeficiency Association visit www.hyperigm.org and www.piduk.org.