Pics: Victor de Jesus/UNP
Standing in the school playground, Wendy Uttley watched her young son happily chase after his little friend at the end of the school day. Suddenly, the carefree scene changed as the friend was pulled away from Sam by a cross-looking mother. Yelling at Wendy, she warned, ‘Keep your child away from mine.’
Now 17, Sam, who has Down Syndrome (more commonly known in the UK as Down’s Syndrome although internationally it is Down) can’t remember the incident that happened more than a decade ago. But former maths teacher Wendy (51) can.
And if she ever needs any reminder why she set up her Bradford-based charity to help support parents and re-educate people about the condition, this would be one. “I remember shouting back, ‘How dare you!’ ” recalls Wendy, who admits she was stunned by the lack of support and level of ignorance she encountered following Sam’s birth in 1997.
At the time she was working in Cornwall, where she lived with her long-term partner Peter (now 60) and toddler Elanor (now 19). After much hard work, their picture postcard cottage was almost complete when she fell pregnant with Sam. Several months into the pregnancy, a scan revealed concern about his heart. But after a 200 mile trek to a larger hospital, they were reassured everything was fine.
After he was born three weeks early, there was concern again about his heart, jaundice and weight-loss as he struggled to feed. Nobody mentioned Down Syndrome until he was three weeks old. “It was mentioned in the same breath as his heart problem. I felt they were hitting us from every angle,” Wendy sighs.
Blood tests were taken and while waiting for a paediatric cardiologist to see him, Sam was christened in hospital. A week later they were told the results – that Sam had Down Syndrome. After weeks of struggle, Sam had surgery in Bristol at three-and-a-half months to repair the holes in his tiny heart. “We kept going because you do. It wasn’t until a year afterwards Peter and me both admitted we didn’t expect Sam to survive,” Wendy adds. Happily he did.
Back home, she admits: “He had such a massive wound all the way down his chest, I remember going to the baby clinic to get him weighed at a different time to all the other mums because I couldn’t face their questions when he was being undressed. “I was never ashamed of him; I just couldn’t cope with the attention.”
By Easter, they’d decided to move back to their native Bradford to be closer to family. Wendy started a monthly support group in September 2000 in a local church hall for other families such as her own, which quickly proved popular. By seven, it was clear Sam’s school wasn’t right for him after he was kept in at break times because of his behaviour. “He wasn’t good at sitting still – lots of children with Down Syndrome aren’t – and school didn’t know how to teach him,” she explains.
“If you get it wrong, that results in behaviour problems. It’s not the child; it’s the environment they are in that causes the problem,” she adds. Taking Sam out, she taught him at home, devising fun ways of learning numbers, speech, reading and writing skills. “I lived and breathed it, but it was a tough time,” she admits. “I remember crying, thinking ‘how am I going to do this?’”
‘We go into schools to explain Down Syndrome isn’t a disease – you can’t die of it’
Persevering, Sam was accepted into a new school where he thrived, and Wendy – who’d given up her teaching job by now – found herself developing early years training for other children with Down Syndrome to prepare them for mainstream school. Demand grew and in 2005, she successfully applied for National Lottery grant funding and received £98,510. Soon she was looking for proper headquarters.
“For the first five years, I ran it from under my bed! Everything we needed – toys for the kids, paperwork – all had to be stored in boxes under there!” she laughs. Aided by a local bequest and another Lottery grant, the charity now employs seven staff and supports hundreds of families. Last year, more than 800 healthcare and educational professionals received training at the centre in Bradford.
One of Wendy’s favourite jobs is going into school assemblies to speak to pupils, who often ask questions adults daren’t. “We explain it’s not a disease; it’s a condition. You can’t die of it; you can’t catch it. People with Down Syndrome are not ‘suffering’. It’s just how they’re made,” she says.
If she ever needs inspiration, she only has to look at Sam, who is thriving in all areas of his life. Currently at college, he hopes to work in the sport and leisure industry. “I am fantastically proud of him,” adds Wendy. “I love telling people, ‘This is my son and this is what he can do. Yes he has Down Syndrome but that doesn’t mean he doesn’t have the potential to live a fulfilled, independent life’. That’s what I want for all children like Sam.”
- For more information on Wendy’s charity, call 01274 561308 or visit www.downsupportbradford.btck.co.uk
- The National Lottery funding supports thousands of charities like Wendy’s. For more details about the funding visit www.lotterygoodcauses.org.uk
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