AS part of Down Syndrome Awareness Week, SNJ reporter Sam Evans spoke to the Smith family about their amazing son Alfie.
THERE are many misconceptions about Down’s syndrome (Ds).
Wide ranging myths exist that people with the genetic condition do not live very long, all look the same and even cannot achieve normal life goals.
This could not be further from the truth as many live well into their 60’s and 70’s, look far more like other members of their family than someone with the condition and are achieving employment, meeting partners and generally getting the best out of life.
However, due to the lack of awareness, these people risk being ostracised and misunderstood, surely one of the biggest worries for any parent who has a child with this condition.
Tiffanie Smith whose son Alfie was diagnosed with Ds just 10 days after his birth emphasised one very important thing.
“Alfie is just a normal little boy,” she said, “He goes to school, plays with his friends and gets in trouble just like any other four-year-old.”
Like the majority of families Tiffanie and her husband Steve were caught completely unaware and never expected the complications that occurred in the immediate aftermath of Alfie’s birth.
Despite a slightly unusual birth in the upstairs bath tub, there were no immediate signs that Alfie had Ds.
However, Tiffanie began to worry that he wasn’t feeding as her daughter Nancy had when she was born and he was often very sleepy.
Five days after the birth Alfie had Billi light treatment and while he was under the lamps he crashed. Hypothermic, hypoglycaemic and apparently in trouble.
Alfie was in intensive care for five days and following blood tests it was confirmed he had Ds.
Tiffanie said: “The hardest time was definitely at the start of his life
“We knew nothing about Ds and stepping into the unknown was very scary.
“It was a complete shock to us and we were very unsure of what Alfie’s needs might be as he grew up.”
However, The Down’s Syndrome Association (DSA) was there to support the family and provide the positive information they required.
They have been extremely good at helping families gain support from local groups, advice on medical needs and access benefits they are entitled to.
The DSA has become very important to the Smith family and they have become increasingly involved in fundraising activities.
Steve raised over £12,500 in an epic motorcycle ride in India which saw him fundraise and campaign for 15 months.
Tiffanie has stayed slightly closer to home, raising awareness in schools by getting people to wear different socks on World Down’s syndrome day Tuesday, March, 21.
She said: “Most people have two of each chromosome but Alfie has three of the 21st pair, therefore on the 21st day of the third month we raise awareness for DS.
“The idea is that socks are socks, they do a job, they feel like socks, but people with Ds have an extra, different ‘sock’.
“They are still people, they still have thoughts, needs, opinions and a range of emotions like everyone else, they are just a tiny bit different, hence different socks.
Alfie does a few days a week at Shrubberies Special School in Stonehouse where he swims and does other activities to help his development.
However, he spends some of his days at Brimscombe pre-school and will move into the full primary system next year.
Tiffanie said: “Alfie has many friends who have grown up with him
“He’s just one of the guys, nobody cares or notices anything is different or unusual.
“He does need help sometimes but other parents have been brilliant, encouraging kids to help get him involved in fun and games and accepting him for who he is.
“30 or 40 years ago Alfie might have been put in an institution, but today he is just another little boy in the community.
“I hate it when people say they feel sorry for him because the sheer enjoyment Alfie gets out of life is amazing.”
The DSA have played a very important part in the lives of the Smith family and they would like to encourage anyone with questions about Ds to get in touch.
Support, information and advice is available from the Down’s Syndrome Association at www.downs-syndrome.org.uk or by calling the DSA Helpline on 0333 1212 300.