Wednesday 28 September 2016

Frock stars... help to fund a Down Syndrome Centre

Hazel Buchanan is making great progress, thanks to interventions from the Down Syndrome Centre in Dublin. Her mother Evelyn tells how fashionistas can help fund this worthy organisation by donating a frock

Joy Orpen

Published 28/09/2015 | 02:30

Yvonne Connolly, who is an ambassador for Buy My Dress, with Hazel Buchanan. Photo: Patrick Bolger
Yvonne Connolly, who is an ambassador for Buy My Dress, with Hazel Buchanan. Photo: Patrick Bolger

When Evelyn Buchanan opens the front door of her Dublin home, a ray of sunshine instantly assails you. The source of the light is a radiant smile from her daughter, Hazel.

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This six-year-old is outgoing and delightfully confident. Like most little girls her age, she never stops babbling; she is also full of enthusiasm, curiosity and questions. The back garden is dotted with toys; there's even a trampoline and a merrily hopping rabbit called Max.

This is clearly a child-friendly home. While Evelyn makes tea, Hazel settles just inches in front of the large television screen. Her mum explains that Hazel has problems with her sight. She also has other, mainly sensory issues, to contend with. For example, she is inexplicably terrified of anything "with more than two legs" and doesn't like loud noises.

Most of this stems from the fact that Hazel is living with Down syndrome.

Evelyn says she and her husband, Alan Buchanan, were delighted when she became pregnant with Hazel, the second of their three children. "It was all peaceful until the 13th week, when a scan revealed a kidney problem," she explains. "So they induced me two weeks early. The baby seemed to be healthy, apart from the kidney issue."

Later that night, Evelyn began to face up to her nagging suspicions that something wasn't quite right. "At midnight, I finally plucked up the courage to ask the midwife if she thought the baby could have Down syndrome," says Evelyn. "But she wouldn't answer that question. However, at 2am, a paediatrician said Down syndrome could be a possibility, as Hazel had certain characteristic features." But uncharacteristically, Hazel had good muscle tone and sucked well.

Next morning, Evelyn phoned her mother and blurted out her fears, before collapsing in floods of tears. Blood tests were done, but it would take three weeks to get the results. In the meantime, thankfully, Hazel's heart was found to be sound. Five days after the birth, mother and baby left the Coombe Hospital and went home. By now, everyone was pretty certain that the final diagnosis would be one of Down syndrome.

Initially, it was a very bitter pill for Evelyn, Alan and their families to swallow. "I cried and cried," says Evelyn. "It was such a terrible shock. Once we knew what it was, some of the medical people started telling us about the problems we could face. But there was one paediatrician who was much more positive, and that gave us hope."

Evelyn now concedes that a good deal of what they were feeling stemmed from their fear of the unknown and their sense of loss. "I definitely had a tough few months adapting to the changed circumstances," she says. "I was grieving for the baby I had thought I was going to have, while, at the same time, learning to love the beautiful baby I did have. I didn't know anything about Down syndrome. The first few days, I was really worried about Hazel's future."

Evelyn says that one of the best pieces of advice she ever got was not to treat Hazel any differently from any other child. And when she bemoaned the fact that her daughter might not manage to do some of the usual things, such as getting married or driving a car, she was told that many people don't get married and many don't drive cars, yet they still lead perfectly fulfilling lives.

So, slowly, Evelyn and Alan began to embrace this happy baby girl and to celebrate her for who she was. But there were health problems to contend with. As luck would have it, Hazel's good kidney began to compensate for the non-functioning one. But unfortunately, there was another serious problem, which wasn't so easily resolved. Hazel's lungs were weak and she constantly needed antibiotics. "As soon as she finished one antibiotic, her temperature would start to spike again," says Evelyn. "In 2012, she had 23 antibiotics, three bouts of pneumonia and four hospital admissions."

Evelyn says doctors generally ascribed Hazel's respiratory problems to her inherent condition, but once again, Evelyn's mother-instinct kicked in. So Evelyn got copies of all the prescriptions from the pharmacy, and showed them to a paediatrician, who then referred Hazel to Crumlin Children's Hospital. Eventually, bronchiectasis was diagnosed. This condition causes mucus to collect in the tubes of the lungs and hinders the flow of air, and can lead to infections. Hazel was put on a long-term, preventative antibiotic and has done so well that her lungs are showing an unexpected, but marked improvement.

Hazel is also enjoying life at St Colmcille Junior National School in Knocklyon. She qualifies for additional hours with a special-needs assistant (SNA) because her vision is significantly impaired. "The principal, John Boyle, is amazing," says Evelyn. "He strives to get the best for every child in the school."

Hazel also benefits enormously from speech therapy at the Down Syndrome Centre in Sandyford. This is Ireland's first services-driven facility for children with Down syndrome. "When we came across the centre last year, we were thrilled," says Evelyn. "We were delighted to hear about all the services they offer, which include speech and language training, occupational therapy, camps, parent-and-tots groups. Hazel loves going, there is such a relaxing atmosphere, with tea and chats for the parents while the little ones have fun."

So the Buchanan family, including Jack (9) and Cori (4), is very definitely behind the Buy My Dress campaign, sponsored by Kellogg's Special K, to raise much-needed funds for this valuable organisation, which receives no Government funding.

Already various celebrities, including Imelda May, Amy Huberman and Victoria Smurfit have donated dresses, which will be on sale, along with many more donated frocks, on October 4 at centres in Dublin (including the RDS), Cork, Galway and Wexford. And here's the great news - nothing will cost more than €30.

Evelyn has nothing but admiration for her headstrong, determined little girl. "She has to work much harder than other kids her age to achieve her goals. But she does so without complaining. She will keep at it until the task has been completed," Evelyn says. "She has a wonderful, happy nature, while never judging others. She really is an inspiration and a treasure."

Dresses may be donated at WeightWatchers classes and Zip Yard stores, or Freepost them to the Down Syndrome Centre, Unit 1 88/89 Furze Rd, Sandyford Industrial Estate, D18, or see downsyndromecentre.ie

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