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Thursday March 20 2014

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FEATURE

Im lucky to be the way I am

Aspiring teacher and artist Molly Watt is much like any other teenager her age. An A-level student at Strodes College in Egham, she has offers from two universities to study primary education, she enjoys going out with her friends and boyfriend and has even had a part- time job working at her local nightclub. But Molly has Usher syndrome, meaning she was born severely deaf and is rapidly becoming blind. News editor Amy Taylor meets a young woman who is about to share her story with the world...
MOLLY is an ambassador for the charity Sense, which in 2010 voted her Young Deafblind Person of the Year. She has fronted a government disability campaign, has a charitable trust set up in her name and this summer will speak in front of audiences of hundreds at Parliament and at Harvard Medical School. Mollys diagnosis came at the age of 12 after daily migraines forced her to see an optician, who recognised the symptoms and referred her to a specialist. A genetic condition affecting just one deaf person in every 25,000, Usher syndrome causes hearing loss at birth from a defective inner ear, while blindness develops gradually from retinitis pigmentosa, which results in night blindness, glare blindness and tunnel vision. Usually, the retinitis begins in adolescence and deteriorates with age but Molly was registered blind more quickly than average. Usher syndrome is currently incurable but both Molly, 19, and her parents Andy and Jane, remain positive. We are all looking for that cure, said Jane. I honestly believe that within 10 years there will be something for her. I dont believe she will ever be in the dark. Mollys trip to Harvard in July will mean speaking in front of scientists and consultants who are all involved in the search for that cure and she is acutely aware of the bittersweet situation her condition has put her in. Usher has given me opportunities to travel, she said, in the clear and tuneful voice so many deaf people never develop. I want to see the world before my sight goes. I dont want to say no to anything so we have been going all over the place, ticking places off my list. The future used to really worry me. I kept saying I dont like talking about the future, lets take it a day at a time . The one thing I do know about my future is that my eyes are going to get worse and I dont want to think about that. I know I will never play tennis again. Not being able to drive that really upset me when all my friends were learning. When I have children, will I be able to see them? She looks momentarily pensive, before flashing the wide smile those who know her see so often. But my sight could get so bad so quickly that I may stabilise for the next 10 years, she adds. Having my condition makes me who I am. Im lucky to be the way I am. Molly has Type 2 Usher, meaning she is severely but not profoundly deaf. With the help of hearing aids, she copes well with normal conversation but struggles with multiple speakers, background noise or different accents. She admits to being clumsy and having a phobia of stairs her independent streak resulting in more than a few bumps and bruises but at 16, she was matched with her beloved guide dog, Unis. Seeing the bond between Molly and her dog, its hard to imagine them apart but accepting a guide dog was perhaps the hardest hurdle of all for the teenager, who says she was in denial about having Usher syndrome. I knew I had to say yes to having Unis, despite my denial, because I needed a guide dog before I could go to university its just a coincidence that shes called Unis. It took me a long time to accept her. I wouldnt step outside the house for a long time with her. Its like having a baby, thinking of another being at 16 that was a big thing. I remember thinking I love this dog but I dont think I need her . I got so close to handing her back. She is full of praise for the way in which staff and students at Strodes have adapted to her needs, and both she and Jane agree that Surrey is unique in its handling of sensory disabilities, which has helped Molly get past periods of depression and frustration. Previous specialist schools left her feeling isolated and burdensome. Strodes was good, they looked at the timetable and made my days as short as possible, Molly said. Before I lost my sight, I was really visual and Im still a very visual learner. I write out all my notes to revise. One day Ill have to use audio books but not yet. Weighing up new people can be a tricky business, with such limited sight. I see an eye and a nose, thats all I can see, I can scan around the face trying to get a visual. She uses her art to portray how she sees the world. Given her limited perspective, her refusal to let go of any aspect of teenage normalcy is all the more remarkable. Selling drinks to rowdy party-goers in a club full of flashing lights would not be the first job a deaf blind person would, or should, choose to take on, but that did not stop her from gaining employment at Smokey Joes nightclub in her hometown of Maidenhead. Looking back, she laughs. Yeah, that was a mistake, she said. They put me in heels and there were steps into the different areas. I fell down a lot and ended up leaving not long after. Getting a job has been hard. Routine is very important to me. I do stress when I dont know what Im doing. It takes me a long time to recover from a night out I can only really do it because Ive got good friends. Despite her failing sight, the future is nothing but bright for Molly. With the trip to Boston on the cards and plenty of motivational work around the country being offered, its easy to forget she has three years at university to prepare for. She has offers to study at Roehampton and Reading universities but knows that even with a teaching degree, her career wont be set in stone. There are a lot of forms to fill out in the applications, including health forms fit to teach forms. I hate that phrase. On paper, it doesnt look good. Deafblind, had depression, suffers from anxiety issues... potential employers might not even meet me. Seeing what their eldest daughter one of four chil-

Strodes had a can-do attitude

MOLLY spoke to fellow students at Strodes College last Thursday, when she praised the school for being openminded about educating young people with disabilities. Molly, who has one English exam to take before moving on from the college, said that because Strodes had been willing to give her a chance, her confidence and academic success has flourished. In her speech, Molly said: I was registered blind at the age of 14. From the age of 15 I was in complete denial. It is a unique condition and is often misunderstood. A lot of people say I look normal what do you expect really? Strodes maintained a can-do attitude. Before I came here, I had isolated myself. A lot of colleges didnt accept me, they thought I would be too much hassle. My friends have accepted me as I am that means a lot to me.

Molly Watt has Usher Syndrome and was voted Senses Young Deafblind Person of the Year 2010. dren has achieved and involved with research and knowing the boost other treatment will be there. To Usher families get from get on the stage and say her seeing her success is an piece will be fabulous. There are a lot of parents undeniable source of pride to her parents, both of out there who want to hear whom are carriers of the what their children can recessive gene that causes achieve. The Molly Watt Trust Usher syndrome. Kindles and When other parents of provides Usher children meet Molly, protective eyewear for with Usher you can see relief in their people faces, said Jane, who is in syndrome, giving them contact with numerous back the gift of reading, a families in the network of task that becomes near to the Coalition for Usher impossible as the condition syndrome Research, largely develops. Anyone who can donate through the Molly Watt Trust, which runs several to the trust, or would like to make a contribution toward fundraising projects. When she goes to Mollys flights to Harvard in Harvard in July, all the July, should visit www. scientists and consultants mollywatt.com.

What is Usher syndrome?

UsHeR syndrome is the leading cause of deafblindness. It affects one out of every 25,000 deaf people. There are three types of Usher. Types 1 and 2 are the most common and together account for more than 90% of all Usher conditions and 10% of all children born deaf. l Type 1 causes profound deafness from birth and poor balance, which often leads to delays in when the child sits and walks. Sight loss, or retinitis pigmentosa, may be noticed before the age of 10. People with Type 1 Usher usually communicate using sign language; l Type 2 causes moderate to severe hearing loss and does not affect balance. Retinitis may not appear until adolescence. Lip reading and hearing aids will usually help to make speech the first method of communication; l Type 3 is rarer and develops later in life, rather than at birth. Early diagnosis is crucial for Usher, as children develop most of their language during the first five years of their life. Choosing how to communicate with an Usher child, either orally or through sign language, is key and depends largely on the type of Usher they have. Usher syndrome is inherited as an autosomal recessive trait, meaning that each parent must be a carrier of the mutated Usher syndrome gene. They may have normal hearing and vision themselves. If both parents are carriers, they have a one in four chance of having a child with Usher with each birth. Most people with Usher will be, or become, night blind and suffer peripheral vision problems, leaving them with tunnel vision. This causes mobility problems, particularly in new or unfamiliar places. Judging depth also becomes a problem, as does seeing monotones such as grey, white and black. Bright or sudden light is particularly stressful for people with Usher. Few people with Usher will become completely blind with zero light awareness.

Molly Watt with her guide dog Unis.