Rowan stays positive in face of life without sight or sound

Rowan Bell was born profoundly deaf. He now faces the knowledge he will also go blind. Catherine Scott reports.

DOING his favourite magic tricks, Rowan Bell entertains his family and friends.

Like many 12-year-olds he is into Connect and Lego and loves to be the joker.

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He laughs with his mum and dad and two brothers – Kristian, 16, and Alistair, six. They seem like any other close-knit family unit. But closer inspection reveals two transmitters attached to Rowan’s head; the tell tale signs of cochlear implants.

For Rowan, from Burton Salmon near Selby, was born profoundly deaf. The cochlear implants – the first fitted when he was just three years old and the second last year – have meant he can hear sounds.

The day he went to have the second cochlear implant switched on should have been a time of celebration and joy for the Bell family as it would improve Rowan’s ability to hear sounds and join in family life. But their happiness was dashed.

It was the day after they learnt that not only was Rowan profoundly deaf but he was suffering from a rare syndrome which would render him blind as well.

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“We were devastated,” says his mum Colleen. “He does so well and is such a happy and laid-back boy, it was really hard to tell him that he was now going to lose his sight.”

Rowan suffers from Usher Syndrome. A rare genetic condition, it is characterised by hearing loss, visual problems and problems with balance. The visual problems are due to a condition called retinitis pigmentosa, in which the retina slowly degenerates and gradually loses its ability to send images to the brain, resulting in a progressive loss of vision.

His parents both carry the faulty gene in order for Rowan to have inherited the condition, and his two brothers were lucky not to inherit Usher Syndrome as well, although they could be carriers.

Rowan is believed to be the only child in North Yorkshire with the condition.

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The diagnosis came as a double blow to Colleen and dad Richard as Rowan had been tested for Usher Syndrome when he was first found to be profoundly deaf as a baby, but the tests came back negative.

“We were warned to look out for symptoms of Usher Syndrome,” says Colleen. “But we were grateful he didn’t have it and thought no more about it.”

Rowan coped well with his deafness. His parents took the difficult decision to go for a cochlear implant when he was three.

“I was concerned that we had made the right decision. He was so little and couldn’t have a say. We had to decide whether he would be part of the hearing world or the deaf world. In the end we decided to give him the chance.

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“It made a big difference to all of us as a family. Almost straight away he responded to his name. It made me cry. Looking back now I know we definitely made the right decision for Rowan as he will still be able to hear sounds when he loses his sight which will help him immensely.”

Then last year they gave Rowan the choice as to whether he wanted the second implants fitted and he said yes. It was after the operation that they were told the devastating news.

“School had said that he had started to bump into things,” explains Colleen. “We decided to refer him back to the ophthalmologist in York and he diagnosed Usher Syndrome. We were absolutely devastated. He already had so many things to deal with and now we had to tell him he was going to lose his sight.”

The Bells got in touch with Sense, the charity for deafblind children and families. They put them in touch with other families.

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“It really helped for Rowan to see how other children dealt with Usher Syndrome. We met a girl who walked with a stick and I think it really helped him come to terms and it helped us break then news to him gradually.” The charity also introduced them to Nicola Brotherdale, a multi-sensory impairment consultant (teacher) for Sense. She acts as a champion for deafblind children and families across the North of England.

Nicola supports deafblind children and young people like Rowan Bell, to live independent, fulfilling lives. Nicola has been working with Rowan and his family to support him and help him to adapt as he continues to lose his vision.

Nicola said: “So much of what we know about the world around us comes from our senses of sight and hearing, so people who are both deaf and blind face many barriers to understanding the world But with the right support, tailored to their individual needs, deafblind children can achieve their potential. For example, recently, Rowan took part in a skiing activity with other children his age with sight and vision loss. He faces his challenges with great optimism and is a source of inspiration.”

Colleen, said: “Before we met Nicola and Sense, we were at a bit of a loss. Rowan is very sociable and bright but we didn’t know where to turn to get the support we needed.

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“Nicola visited us at home and assessed Rowan’s needs. She advised us on changes we could make to the house and garden to improve accessibility for Rowan and help him to join in with activities his two brothers enjoy.  She has also helped us to meet other families with deafblind children through a number of Sense family days and activities. 

“We’re so proud of Rowan and how he is adapting to losing his sight – he has been taking part in mobility training and learning how to negotiate crowds while using a cane which is a really big step.  We’re filled with hope for Rowan’s future and what he is capable of achieving.”

Rowan’s brothers know he is losing his sight and Colleen works hard to educate them to help their brother.

“They get on very well. I have to remind them not to leave things on the floor because Rowan will not be able to see them and might fall over them. We are always positive about the things that Rowan can do rather than the things he can’t. There are so many things he can do. He is learning to touch type and work a special computer.

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“We don’t know how long it will be until he loses his sight altogether. Some days it is worse than others but he just takes it all in his stride. He makes it easy for us.”

Rowan attends mainstream Castleford High School, which has a special unit attached to it for children with hearing impairment.

“We feel he has the best of both worlds,” says Colleen.

“He is at a mainstream school and he gets all the support he needs and he is doing well.

“He has a lovely little group of friends and loves to do all the things that 12-year-old boys do.”

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Colleen knows that the future will be hard for Rowan, but with his laid-back attitude and acceptance of everything life throws at him she is confident that her middle son will be okay.

“He really wanted to drive a van like his granddad and I had to say to him that it was very unlikely that he would ever be able to. He thought about and said. ‘Oh yes my eyes’, shrugged and then got on with life.

“There has been one night when he woke up frightened in the dark, unable to hear or see. But we reassured him that we were there for him and he has been fine ever since.

“ It has helped us so much to see how well other families cope.”

Support and advice

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International Deafblind Awareness Week (June 27 – July 3) celebrates the birthday of Helen Keller, the famous deafblind activist, as well as the work of people much closer to home. 

Sense estimates that there are around 469 deafblind children and adults across Yorkshire, although Rowan Bell is thought to be the only child with Usher Syndrome.

If you know someone who has both sight and hearing loss, or would like to know more about Sense contact: Tel: 08451270066 or Email: [email protected] or visit www.sense.org.uk