18 Thursday March 20 2014 HERALD AND NEWS www.getsurrey.co.uk

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MOLLY spoke to fellowstudents at Strode’sCollege last Tursday, when she praised theschool for being open-minded about educating young people withdisabilities.

Molly, who has oneEnglish exam to takebefore moving on fromthe college, said thatbecause Strode’s hadbeen willing to give her achance, her confidenceand academic successhas flourished.

In her speech, Mollysaid: “I was registeredblind at the age of 14.From the age of 15 I wasin complete denial.

“It is a unique condi-tion and is often misun-derstood. A lot of peoplesay I look normal – whatdo you expect really?”

“Strode’s maintained acan-do attitude. Before Icame here, I had isolatedmyself.

“A lot of colleges didn’taccept me, they thoughtI would be too muchhassle. My friends haveaccepted me as I am –that means a lot to me.”

Strode’shad a‘can-do’attitude

USHER syndrome is theleading cause ofdeafblindness. It affectsone out of every 25,000deaf people.

Tere are three types ofUsher. ypes 1 and 2 arethe most common andtogether account for morethan 90% of all Usherconditions and 10% of allchildren born deaf.l ype 1 causes

profound deafness frombirth and poor balance, which often leads to delaysin when the child sits and walks. Sight loss, orretinitis pigmentosa, maybe noticed before the ageof 10. People with ype 1Usher usuallycommunicate using signlanguage;l ype 2 causes

moderate to severehearing loss and does not

affect balance. Retinitismay not appear untiladolescence. Lip readingand hearing aids willusually help to makespeech the first method ofcommunication;l ype 3 is rarer and

develops later in life,rather than at birth.

Early diagnosis is crucialfor Usher, as childrendevelop most of theirlanguage during the firstfive years of their life.

Choosing how tocommunicate with anUsher child, either orallyor through sign language,is key and depends largelyon the type of Usher theyhave.

Usher syndrome isinherited as an autosomalrecessive trait, meaningthat each parent must be a‘carrier’ of the mutated

Usher syndrome gene.Tey may have normalhearing and visionthemselves. If both parentsare carriers, they have aone in four chance ofhaving a child with Usher with each birth.

Most people with Usher will be, or become, nightblind and suffer peripheral vision problems, leavingthem with tunnel vision.Tis causes mobilityproblems, particularly innew or unfamiliar places.Judging depth alsobecomes a problem, asdoes seeing monotonessuch as grey, white andblack. Bright or suddenlight is particularlystressful for people withUsher. Few people withUsher will becomecompletely blind with zerolight awareness.

What is Usher syndrome?

‘I’m lucky to bethe way I am’

Molly Watt has Usher Syndrome and was votedSense’s Young Deafblind Person of the Year 2010.

Aspiring teacher and artist Molly Wattis much like any other teenager her age.An A-level student at Strode’s College in

Egham, she has offers from twouniversities to study primary education,she enjoys going out with her friends

and boyfriend and has even had apart- time job working at her local

nightclub. But Molly has Ushersyndrome, meaning she was born

severely deaf and is rapidly becomingblind. News editor Amy Taylor meets a

young woman who is about to shareher story with the world...

MOLLY is an ambassadorfor the charity Sense, whichin 2010 voted her YoungDeafblind Person of the Year.

She has fronted a govern-ment disability campaign,has a charitable trust set upin her name and thissummer will speak in frontof audiences of hundreds atParliament and at HarvardMedical School.

Molly’s diagnosis came atthe age of 12 after dailymigraines forced her to seean optician, who recog-nised the symptoms andreferred her to a specialist. A genetic condition

affecting just one deafperson in every 25,000,Usher syndrome causeshearing loss at birth from adefective inner ear, whileblindness develops gradu-ally from retinitis pigmen-tosa, which results in nightblindness, glare blindnessand tunnel vision. Usually,the retinitis begins inadolescence and deterio-rates with age but Molly was registered blind morequickly than average.

Usher syndrome iscurrently incurable – butboth Molly, 19, and herparents Andy and Jane,remain positive.

“We are all looking forthat cure,” said Jane. “Ihonestly believe that within10 years there will be some-thing for her. I don’t believeshe will ever be in thedark.”

Molly’s trip to Harvard inJuly will mean speaking infront of scientists andconsultants who are allinvolved in the search forthat cure and she is acutelyaware of the bittersweetsituation her condition hasput her in.

“Usher has given meopportunities to travel,” shesaid, in the clear andtuneful voice so many deafpeople never develop.

“I want to see the worldbefore my sight goes. I don’t want to say no to anythingso we have been going allover the place, tickingplaces off my list.

“Te future used to really worry me. I kept saying ‘Idon’t like talking about thefuture, let’s take it a day at atime’.

“Te one thing I do know

about my future is that myeyes are going to get worseand I don’t want to thinkabout that.

“I know I will never playtennis again. Not being ableto drive – that really upsetme when all my friends were learning. When I havechildren, will I be able tosee them?”

She looks momentarilypensive, before flashing the wide smile those who knowher see so often.

“But my sight could getso bad so quickly that I maystabilise for the next 10 years,” she adds. “Havingmy condition makes me who I am. I’m lucky to bethe way I am.”

Molly has ype 2 Usher,meaning she is severely butnot profoundly deaf. Withthe help of hearing aids, shecopes well with normalconversation but struggles with multiple speakers,background noise ordifferent accents.

She admits to being‘clumsy’ and having aphobia of stairs – her inde-pendent streak resulting inmore than a few bumps andbruises – but at 16, she wasmatched with her belovedguide dog, Unis.

Seeing the bond betweenMolly and her dog, it’s hardto imagine them apart butaccepting a guide dog wasperhaps the hardest hurdleof all for the teenager, whosays she was in denial abouthaving Usher syndrome.

“I knew I had to say yes tohaving Unis, despite mydenial, because I needed aguide dog before I could goto university – it’s just acoincidence that she’scalled Unis.

“It took me a long timeto accept her. I wouldn’tstep outside the housefor a long time withher. It’s like having ababy, thinking ofanother being – at16 that was a bigthing.

“I rememberthinking ‘I love thisdog but I don’t think Ineed her’. I got so closeto handing her back.”

She is full of praise for the way in which staff andstudents at Strode’s haveadapted to her needs, andboth she and Jane agreethat Surrey is ‘unique’ in itshandling of sensory disabil-ities, which has helpedMolly get past periods ofdepression and frustration.

Previous ‘specialist’schools left her feeling

isolated and burdensome.“Strode’s was good, they

looked at the timetable andmade my days as short aspossible,” Molly said.“Before I lost my sight, I wasreally visual and I’m still a very visual learner. I writeout all my notes to revise.One day I’ll have to useaudio books but not yet.” Weighing up new people

can be a tricky business, with such limited sight. “Isee an eye and a nose, that’sall I can see, I can scanaround the face trying toget a visual.”

She uses her art to portrayhow she sees the world.

Given her limitedperspective, her refusal tolet go of any aspect of‘teenage normalcy’ is all themore remarkable. Sellingdrinks to rowdy party-goersin a club full of flashinglights would not be the first job a deaf blind person would, or should, choose totake on, but that did not

stop her from gainingemployment at SmokeyJoe’s nightclub in her home-town of Maidenhead.

Looking back, she laughs.“Yeah, that was a mistake,”she said. “Tey put me inheels and there were stepsinto the different areas. I felldown a lot and ended upleaving not long after.

“Getting a job has beenhard. Routine is very impor-tant to me.

“I do stress when I don’tknow what I’m doing. Ittakes me a long time torecover from a night out – Ican only really do it becauseI’ve got good friends.”

Despite her failing sight,the future is nothing butbright for Molly. With the trip to Boston

on the cards and plenty ofmotivational work aroundthe country being offered,it’s easy to forget she hasthree years at university toprepare for.

She has offers to study atRoehampton and Readinguniversities but knows thateven with a teaching degree,her career won’t be set instone.

“Tere are a lot of formsto fill out in the applica-tions, including healthforms – ‘fit to teach’ forms. Ihate that phrase.

“On paper, it doesn’t lookgood. Deafblind, haddepression, suffers fromanxiety issues... potentialemployers might not evenmeet me.”

Seeing what their eldestdaughter – one of four chil-

dren – has achieved andknowing the boost otherUsher families get fromseeing her success is anundeniable source of prideto her parents, both of whom are carriers of therecessive gene that causesUsher syndrome.

“When other parents ofUsher children meet Molly, you can see relief in theirfaces,” said Jane, who is incontact with numerousfamilies in the network ofthe Coalition for Ushersyndrome Research, largelythrough the Molly Wattrust, which runs severalfundraising projects.

“When she goes toHarvard in July, all thescientists and consultants

involved with research andtreatment will be there. oget on the stage and say herpiece will be fabulous.

“Tere are a lot of parentsout there who want to hear what their children canachieve.”

Te Molly Watt rustprovides Kindles andprotective eyewear forpeople with Ushersyndrome, giving themback the gift of reading, atask that becomes near toimpossible as the conditiondevelops. Anyone who can donate

to the trust, or would like tomake a contribution towardMolly’s flights to Harvard inJuly, should visit www.mollywatt.com.

Molly Watt with herguide dog Unis.