Airdrie & Coatbridge Advertiser
£3K funds-racer is inspired by brave tot Drew
Family set target to help other kids with rare developmental disorder
The family of a Plains toddler battling a rare genetic disorder that affects just one in 18,000 people across Britain are raising funds to aid a charity’s fight against the condition.
Little Drew Smith was diagnosed with Williams syndrome in March, transforming the lives of the 15-month-old and her family forever.
The developmental disorder – which occurs randomly and can affect anyone – strikes at various parts of the body, including the heart, leads to learning difficulties and hypersensitive hearing and sees sufferers develop distinctive facial features.
Drew’s parents – Nikki, 36, and Andy, 31 – received the shock news their daughter had been diagnosed with the lifelong disorder over the phone and have spent the subsequent few months learning more about the condition.
Nikki told the Advertiser: “We are trying to make people understand, and become more aware of, what Williams syndrome is as not a lot of people know about it.
“It’s similar to Down’s syndrome, but we’ve been told that only one in 30 doctors will ever come across someone with the disorder.
“People diagnosed with Williams syndrome are extremely sociable and Drew is so smiley and looks for cuddles from everyone.
“She is seeing specialists for each of her individual needs and is doing a lot better than some people living with the condition; she is walking, which some children can’t do until they are six years old.
“In terms of the future, the bestcase scenario is that she will be able to attend a mainstream school with support, and one day she could live on her own in supported- living accommodation.
“It shouldn’t have an effect on her life span, unless she encounters issues relating to her heart.”
Nikki, Andy and their family and friends are doing their bit to help charity the Williams Syndrome Foundation by holding a series of fundraisers.
They have a £3000 target in mind, with over half of the cash collected so far – £600-plus coming courtesy of Drew’s older brother Campbell, three, who ran a 1k around his home village at the weekend to “help his baby sister”.
Nikki said: “The Williams Syndrome Foundation have been our biggest support since Drew was diagnosed.
“They have put us in touch with other families affected by the disorder and have been absolutely brilliant; we don’t know what we would’ve done without them.
“We wanted to show our appreciation by raising funds for the charity, and set a £3000 target.
“We’ve managed to raise over half of that amount so far. Drew’s granddad John [ Morgan] did a sponsored spin class at the Hilton Strathclyde, where he works, which collected £1305.
“Other people in the family are planning things – including a charity night in September – and Campbell was really keen to help his baby sister.
“He’s been brilliant with Drew, including learning sign language with her, and asked what else he could do for her.
“We came up with the 1k run through Plains and our local residents’ association, Beverley Park, got a lot of the kids to make posters and banners for Campbell.
“Many of our neighbours came to support him on the day and some of the children even ran alongside him.
“It was a fantastic morning and Campbell was chuffed to complete his 1k.
“He’s raised £ 625 so far but we set up a Crowdfunding page and donations are still coming in.
“Every penny counts towards our final total and giving us the chance to help the invaluable work carried out by the Williams Syndrome Foundation.”
To donate to the Smith family’s fundraising campaign, visit www. justgiving.com/fundraising/NikkiSmith25 or www.crowdfunder.co.uk/ running-a-1k-for-my-baby-sister
For more information on Williams syndrome and the Williams Syndrome Foundation charity see www.williams-syndrome.org.uk/