LYNN Roe’s son Ben is a ‘typical little boy’, she says - and that’s exactly how his mum wants other people to view him, too.
For even though 10-year-old Ben has Down’s Syndrome, Lynn is determined to make sure her son ‘achieves whatever he wants’, while smashing some myths about the condition.
“I just want him to be a grounded adult, for him to live independently and be happy, as well as being accepted for who he is,” said the mum, aged 50.
“It’s getting better than it was in the past, with the medical profession treating and understanding people with Downs Syndrome better, but there are things which irritate us DS mums.”
For the past seven days, attention has been focused on the condition by Down’s Syndrome Awareness Week, which aims to educate people about the symptoms and challenges facing people with the disorder.
“A lot of people say exactly the same thing when they see Ben,” said Lynn, from Warmsworth, Doncaster.
“I noticed it for the first time in the supermarket, it always happens. The first remark out of a person’s mouth is ‘They’re such loveable people’, and it’s irritating. They have their moods just like we do.
“People say hello to us all the time, and I can’t really knock it, it’s lovely, but in this day and age people should think twice about doing it to any child, especially when we teach them about ‘stranger danger’ and things like that.
“It also makes me laugh when people see him and say ‘Look at him, isn’t he dressed so trendy?’ I want to say ‘How should I be dressing him?’”
Ben is the youngest of three adopted sons taken on by full-time carer Lynn and her husband Dennis, 53, a countryside ranger, after attempts to have their own children failed.
Both of Ben’s brothers, Aaron, 26, and Hale, 19, also have special needs, with Aaron suffering from fetal alcohol syndrome, caused by his birth mother drinking during pregnancy.
“It’s a very complex syndrome, it gives them mental and physical disabilities and there are hidden issues as well,” Lynn said.
“I just wish people realised what they’re doing when they drink during pregnancy.”
She continued: “Adoption wasn’t the easy option - we did try fertility treatment, but I’m a person that’s quite matter of fact, so I said ‘enough is enough’. It’s not the be-all and end-all, having a child naturally. Not every woman’s the same, but that’s just me.
“It’s a physical need for some women to have their own child.”
Lynn adopted Ben in 2003, following a lifelong desire to care for a child with Down’s Syndrome.
“It’s something I can’t explain. As a teenager I did a lot of voluntary work with adults with learning disabilities, so it never fazes me. I also have an older brother with quite severe learning disabilities. To us it was normal. I was something I wanted to do.
“There are more people willing to adopt a child with Down’s Syndrome now.
“A lot of it is through good education and knowing these kids can achieve as much as any other child, if given the right nurturing.”
She described Ben as ‘adorable and funny’, adding: “He makes me laugh every day. He’s stubborn - he knows what he wants - and he’s very bright.”
Lynn home-schools Ben, as he missed out on starting education at the same time as his peers because of two bouts of life-threatening leukaemia.
He came down with acute myeloid leukaemia in 2004, followed by acute lymphoblastic leukaemia in 2006. At the time doctors believed him to be only the second person in the country to develop both diseases successively.
But despite Ben’s difficulties, Lynn said she envisages her son having a bright future.
“I can see him doing a job with a camera - a photographer or something like that. I would like him to achieve whatever he wants.”
60,000 people living with the condition
Around one in every 1,000 babies born in the UK will have Down’s Syndrome, and there are around 60,000 people in country living with the condition.
Down’s Syndrome is caused by the presence of an extra chromosome in a baby’s cells. Usually, the nucleus of each cell contains 23 pairs of chromosomes, 23 of which are inherited from a baby’s mother and 23 from its father. In people with Down’s the cells contain 47 chromosomes, an extra copy of chromosome 21.
Although the chance of a baby having Down’s Syndrome is higher for older mothers, more babies with Down’s are born to younger women. It occurs by chance at conception and is irreversible.
People with the syndrome will have a degree of learning difficulty. However, most people will walk and talk and many will read and write, go to ordinary schools and lead semi-independent lives.
The average life expectancy for a person with Down’s is between 50 and 60. A considerable number live into their 60s.
A description of the condition was first published in 1866 by the English doctor John Langdon Down.
Common health issues include heart problems, hearing or sight impairment, thyroid disorder, a poor immune system and respiratory complaints.