I thought I was a bad mum fo or 11 years.. then my daughter waas diagnosed with Down'ssyndrome; BEVERLEY MINETT BLAMED HERSELF FOR R HER DAUGHTER CLAIRE'S BAD BEHAVIOUR AND SLOW DEVELOPMENT, UNTIL SHE GOOT THE ANSWERS SHE NEEDED BY JANE GREGOORY.
Looking down at her baby daughter, Beverley Minett noticed her eyes had an unusual slant. But she dismissed it as a quirk as, in all other respects, her baby looked no different to anyone else's.
no It took a further 11 years before fore Beverley discovered her beloved daughter Claire suffered from Mosaic Down's syndrome, a rare form of Down's that few people have heard of. ved saic wn's While the diagnosis certainly explained her Many might this condition disruptive behaviour and learning problems, it hasn't held Claire back from living life to the full. Now 34, Claire lives independently and graduated with a 2:1 degree in media in July. She is a wonder to her mum Beverley, 60, a print finisher, and her partner of 22 years Paul, 54, a printer.
and not 60, 22 o "Most mums are devastated to discover their babies have Down's syndrome," says Beverley, from Rochdale, Greater Manchester. "But I was relieved because it meant that Claire wasn't a naughty child and I wasn't a bad mum.
"Claire is so unusual. She can go halfway across the world to a medical conference all on her own, but a fly trapped in her flat can cause her to phone me in hysterics. In some ways she's like a teenager."
After giving birth to Claire, her first child, in August 1978, Beverley soon noticed she was slower than friends' babies when sitting up and reaching for objects, and her " After giving birth to Claire, her first child, in August 1978, Beverley soon noticed she was slower than friends' babies when sitting up and reaching for objects,and her ingeing drove Beverley to Claire's slow development e obvious when Beverley's d, Andrew, now 33, came onths later.
constant wh distraction. C became more second child along 14 mo "I once le while I ans Beverley, wh her children "When I cam the carpet wi drank all th and urinate I told her looked confu Convinced naughti her sc h eft Andrew on the toilet swered the door," says ho has been divorced from n's dad for over 20 years. "me back Claire decorated ith his waste. She regularly he kids' milk at playgroup ed down the slide. When I twas wrong she just used."
her children "When I cam the carpet wi drank all th and urinate I told her looked confu Convinced naughti her sc h n's d me b ith h he ki ed d it w used d the ines GP cans heari blan adv CSs d there was more to Claire's iness, Beverley badgered GP for help. But brain cans, and vision and hearing checks all drew a blank. "One psychologist advised: 'Don't worry - Claire's so outgoing. She'll get a job on the stage!' But I knew there was more to it," says Beverley.
w Claire's disruptive behaviour continued through primary t sc earn aged econ ok C la se too school and she found earning difficult. Finally, aged 11, and about to start econdary school, Beverley ok Claire to a geneticist la se too who tested her chromosomes and gave her a diagnosis of Mosaic Down's syndrome.
Beverley had never heard of the condition, which affects just one in 100,000 people in the UK. Like mosaic patterns formed from many small pieces, Claire had two or more types of different cells in her genetic make-up. Around 13% of her cells had an extra chromosome and the rest were normal.
Beverley felt the diagnosis brought an end to her 11-year search for answers. he nd ch "I didn't feel sad she had Down's. I only felt upset these tests hadn't been done earlier. I'd wasted years feeling like I was letting her down because I couldn't help." e had hese rlier. en she set the ear g like own lp." is, about ical d the her the road ghtl l " After her diagnosis, a geneticist wrote about Claire in a medical journal, and described the characteristics of her Down's syndrome - the crease in her palms, broad, flat nose and slightly slanting eyes.
d, ly As at spo " says m peop cism "I'm amazed I didn't spot these things before," says Beverley. "It makes me wonder how many people are living with mosaicism and don't know it." ot ys e le m and " The effects of mosaicism vary widely. Some people with MDS can have all the problems associated with Down's and others may have none of them.
m vary MDS ems n's e Cl icism with roble Dow none Clairejust Claire to Beverley became more patient with Claire and spent more time explaining things. Claire was also moved to a special school, where she thrived. things go her But Claire did struggle to come to terms with her condition. She recalls: "I wanted to be like everyone else and I didn't understand what it meant. Later, I wondered if my condition meant I wouldn't be able to have children so I looked online and joined some groups."
During her teenage years Claire's forwardness with boys was Beverley's biggest worry.
"She was too friendly and had less inhibitions than other girls her age. I tried to warn her about safe sex and was terrified she'd get pregnant. She'd never be able to cope with a child and her risk of having one with neve an full Down's Syndrome is 50%. So when she was 15 her doctor put her on the Pill."
cpsattt " Claire left school at 16 with no GCSEs and couldn't settle. She flitted from college courses to jobs in pubs, admin and shops but kept leaving as she couldn't do things her way. "I find teamwork hard and never felt like I fitted in," says Claire.
tni 2 2m In September 2000 aged 22, Claire married a man she met while working in a supermarket. He also had special needs and had been at the same school, a couple of years apart.
as had special n at the same ye y ars apart.
"They mo I was bessttb "They moved in together and I was happy for Claire because she had found someone to love her," says Beverley. "But three years later they broke up, though she says she's happier on her own."
" Beverley admits she sometimes wonders what Claire might havefiwh 1cf DISRUPTIVE: child 2000 marr met w supe need sch. oved s ha ecau ome says three brok ys s own he n volu child ut al rese say , she dia e to m-ma mme alon Dow conferen so prou say her For th Cl C aire did v did sabled c to find ou MDS by r internet," In 2007, to study me own website freelance film Last sum Florida a Mosaic confe mm falls mm " For the next four years Claire did voluntary work with disabled children. "I wanted to find out all I could about MDS by researching on the internet," says Claire.
In 2007, she went to college to study media and set up her own website to promote her freelance film-making service.
just falls f ll pieces if Last summer Claire flew to Florida alone to speak at a Mosaic Down's syndrome conference there. "I was so proud of her," says Beverley. "When she was little I wondered if she'd ever be able to leave home."
don't way been like without her condition. "I envy mothers who have a more equal relationship with their daughters, who can go for a coffee together and just chat. But it's not like that with me and Claire because I'll always feel responsible for her. She falls apart if things don't go her way and takes things very literally."
Despite everything, Claire graduated from the University of Bolton with a 2:1 honours degree in media. She has a wide circle of friends - some with special needs, some not. And she's made short films about MDS.
"I love learning new skills. I'm looking for the right job and keep myself busy by raising awareness of Mosaic Down's syndrome and supporting parents on social networking sites," says Claire.
of have an of this.
21 with "Things like housework can be overwhelming. Many people with MDS can suffer depression and I work hard to understand how my behaviour affects others. I'm fascinated by how it affects the structure of my cells, and what happens inside them."
the cells About have after that This is on a " Beverley adds: "I love Claire to death and I am extremely proud of her. She never ceases to inspire me.
VISIT WWW.IMDSA.ORG FOR INFO OR WWW.DOWNS-SYNDROME. ORG.UK. CLAIRE'S WEBSITE IS WWW. JAMMERS.ME.UK/~CLAIRE/WP Down's syndrome: the facts Down's syndrome is a genetic condition that causes some learning disabilities and certain physical features.
About one baby in a thousand is born with Down's syndrome.
The condition is produced by the presence of an extra copy of chromosome 21 in a baby's cells. It occurs by chance at conception and is irreversible. As yet, no one knows what causes the presence of the extra chromosome 21. It can happen to anyone and nobody is to blame - nothing done before or during pregnancy causes the syndrome.
The three types of Down's syndrome ? Trisomy 21 - all the body's cells have an extra chromosome 21. About 94% of people with Down's syndrome have this.
ex ? Translocation - extra chromosome 21 material is attached to another chromosome. Around 4% of people with Down's syndrome have this type.
ma ch Do M hav 2% th? Mosaic - in which only some of the cells have extra chromosome 21 material. About 2% of people with Down's syndrome have this type.
Initi birt Dow th t en samp Initial diagnosis is usually made soon after birth based on physical characteristics that Down's syndrome commonly causes. This is then confirmed by a chromosome test on a sample of the baby's blood.
Many people might have this condition and not knowe Cl f ll Clairejust falls Claire just falls to pieces if things don't go her wayINSPIRATION: Beverley is extremely proud of her daughter
STRUGGLE: Beverley fought for Claire's diagnosis
DISRUPTIVE: As a child
BABY: Claire looked normal
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|Publication:||The Mirror (London, England)|
|Date:||Jan 15, 2013|
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