Harvey Roberts was born with Stickler Syndrome, a rare condition which affects one in 10,000 babies. Catherine Scott reports.
Harvey Roberts is a cheeky chap. Like most four-year-old boys he is in to everything and enjoying going to nursery school. But Harvey is different. Harvey suffers from Stickler Syndrome, which means his eyesight is impaired as is his hearing, and he was born with a cleft palate.
As a result of the genetic condition, which affects one in 10,000, Harvey has had to wear contact lenses since he was just a few weeks old. Without them he can see no further than four inches in front of him. Although he has had an operation to fix his cleft palate Harvey still has very few words but is doing his best to communicate with those around him.
But despite all this he is a bright little boy who enjoys life and has an amazing empathy for others.
“It may be because of what he has been through but he is very sensitive towards other people,” says his dad Steve from Pudsey.
Now Steve is doing a number of fund-raising runs to raise money for the Stickler Support Group which helps families affected by the condition, works with medical professions and also raises money for research.
“There is only one support group in the UK for people with Stickler,” explains Steve.
“It is so rare and yet many believe that a lot of people go undiagnosed because the severity and number of symptoms varies from person to person.” Steve and Harvey’s mum realised quite quickly that all was not well.
“Everything had gone well with the pregnancy and birth but just as we were getting ready to take him home his head went back, he started being sick and then he turned blue. The doctor came in and rushed him off the another room and wouldn’t allow us in. It was terrible. It was probably only a few minutes but it felt like hours.”
Doctors got Harvey breathing again but he was taken to the Intensive Care Unit at Leeds General Infirmary. They told his parents that he had a cleft palate, a small split in the roof of his mouth which meant that there was nothing stopping food and vomit going straight into his airways and choking him. It was hard for the couple to comprehend what was happening to their precious son.
“He was a big baby, 9lbs 10oz and to see him in intensive care with all those tiny babies was almost comical. He didn’t look like he should be there.”
The couple were shown how to feed Harvey with a special bottle as the cleft palate meant he could not suck properly. It was also while they were there that someone mentioned Stickler. Babies born with Stickler Syndrome are often very shortsighted and once Robert and his then partner got Harvey home they convinced themselves that his eyesight was okay.
“I suppose you are in denial. But he seemed to respond to us, especially his mum. He would look at books and we thought that perhaps it was just his cleft palate.”
But when he was four weeks old Harvey had his eyes tested and the consultants explained that he could only see four inches in front of him and that was never likely to improve.
“That was really hard to hear as it meant that it was even more likely that he had Stickler Syndrome. We took it really hard but the doctors convinced us that Harvey should be fitted with hard contact lenses as soon as possible.
“The condition also affects his hearing and so he felt that unless he could see it would really affect his development and ability to communicate. I had no idea that babies who were so small could have their eyes tested and be fitted with contact lenses.”
At just ten weeks old Harvey got his first contact lenses which enabled him to see his parents properly for the first time. He quickly adjusted to wearing them and now, at just turned four, he knows no different. Although he underwent speech therapy from an early age, 18 months ago his parents took the decision for him to have an operation to repair the cleft palate, which has improved his speech.
Harvey’s language skills are still very behind his peers, but his bright and happy disposition and great sense of humour help him to make himself understood.
“There is a 50 per cent chance that if Harvey wants to have children that they will have it, but with advances in science he may well be able to have a child free from the condition if that’s what he wants.”
Steve hopes to raise £2,000 for the Stickler Support Group. “Harvey’s mum and I are no longer together and so this is one way that I can do something for him and his future.”
Steve Roberts is hoping to raise £2,000 for the Stickler Support group by running half marathons in Bath and South Yorkshire and then the London Marathon later this year.
The family recently attended a conference organised by the Stickler Support Group where 100 families affected by Stickler got together.
“It was a positive experience,” says Steve. “There were parents there with children aged around seven so it was great to able to talk to them about how they coped with starting school, and then there was a girl in her 20s who had been travelling.
“It was fantastic to just what she had been able to achieve. There were generations of people there with Stickler.“
Anyone who wants to sponsor Steve or find out more should visit http://www.justgiving.com/SteveRoberts2012