Brighouse mum Sharon Kilner is hoping to overcome her fear of heights to raise awareness of a medical condition which has left her young son with impaired hearing and mobility problems.
Joshua Kilner, just two, was born with the life-threatening virus CM (cytomegalo) which has caused permanent disabilities. He is profoundly deaf in his left ear, cannot walk and is unable to gain weight properly. When he was born in Calderdale Royal Hospital, Joshua seemed to be a healthy baby boy but he rapidly developed a red rash all over his body - one of the symptoms of the CM virus.
He was rushed into the special care baby unit because he was having difficulty breathing normally and subjected to numerous tests before there was a positive diagnosis. In the end it was a urine test that gave an accurate picture of the medical condition that had affected Joshua.
For Sharon and Kevin Kilner it was a steep learning curve as they tried to find out all they could about a condition they had never even heard of.
“Apparently it is a very common virus and one in 150 new babies are born with it without any problems. But for one in 1,000 babies there are permanent disabilities - in fact it is more common than Down’s Syndrome,” said Sharon, of Healey Wood Road.
“CM virus can affect babies in different ways so we have to wait and see how it develops. We are currently waiting for an MRI scan to see if Joshua has cerebral palsy.
“Despite everything Joshua is a lovely, cheeky, smiley little boy. We could not ask for a happier little boy. He has surprised us all with what he has achieved and he is very determined. We feel optimistic about his future because he tries so hard to make progress.”
Sharon, who works at Tesco’s in Brighouse, is undertaking a charity zip slide at the Imperial War Museum in Manchester on Sunday to raise money for CMV Action UK.
“I don’t really like heights so for me it’s going to be a big thing to go across the Manchester Ship Canal and land near the Lowry.
“I can’t really say that I’m looking forward to it but I really want to raise awareness of CM virus. There is no information about it in maternity packs and it seems that mums aren’t warned about it at midwife appointments.
“It really is a ‘stealth virus’ and I think there should be a lot more known about it and the long-term effects of it.
“Research is going on all the time and it may be that there will be a nationwide vaccine for babies in due course.”
So far Sharon has raised £800 through sponsorship and Tesco’s has promised to top up any amount she raises. Kevin is manager of a Tesco Express shop in Leeds. The couple also have a four-year-old daughter Lucy who has just started at Woodhouse School, Brighouse.
“Lucy is brilliant with Joshua and they get on really well. At the moment we are just waiting to see how things develop for Joshua.
“He cannot walk yet and he uses a special walking frame to try to strengthen his legs. He has low muscle tone and he doesn’t gain weight properly. He goes to Watersedge Nursery in Brighouse and the staff are very helpful with him.
“We take him for consultations with 11 specialists and it’s easy to let medical appointments take over your life. I would like more people to know about this virus so that they are better prepared.”
l CMV Action works to raise public awareness of congenital CMV, and campaign for better prevention measures within our health service. CMV is a common birth disorder which affects around 1 in 150 newborn babies. Although it is a leading cause of lifelong disabilities, very few pregnant women are aware of the risk it poses.
l Sharon can be sponsored for her zip wire challenge through Virgin Money Giving.