Hand of friendship is offered across water
Family’s £95k cash boost for kids living with syndrome
A Cambuslang family which has raised almost £100,000 to help children living with facial abnormalities to overcome bullying and isolation is this week extending the hand of friendship to America.
Brian and Lynne Duffin have raised thousands of pounds for Goldenhar Syndrome Support Group, an organisation they joined soon after their daughter Chloe was diagnosed with the rare condition.
The illness saw Chloe born with a partially formed left ear, half a jaw and four of the usual seven neck vertebrae.
With only 200 people diagnosed with Goldenhar in the UK, the support group is a vital outlet where Chloe, 14, can meet other young people who are just like her.
And after watching the programme Two in a Million - which featured American teens Austin and Elena who had never before met another young person with Goldenhar Syndrome - the Duffins are working to bring the duo to the UK group.
Brian said: “My wife has managed to contact them and we are trying to get the kids over here next year.
“Watching the programme, Elena had such great similarities to Chloe, the way she acted, she doesn’t play much and stays very close to her family.
“Chloe has been bullied at school and she stays very close to home. We dealt with that and it has been fine since but it was horrendous for her.”
He added: “These kids have never met anyone else with Goldenhar.
“We found the support group many years ago just after Chloe was born. There wasn’t much money in the pot then. We have raised money to get the families together as they have a family weekend every year.
“There are 30 families with 30 kids that come to our events and they have a great time, they all identify with each other.”
The Duffin family has been crucial to bringing young people with the illness from across the UK together.
Raising around £95,000 to date, the money has been used to fund weekend trips to UK cities, where parents meet with specialist doctors as their children enjoy fun activities with youngsters who also have Goldenhar Syndrome.
It has resulted in strong friendships between children often bullied for looking different.
Chloe said: “I love going down [to the support group] because I meet my friends Ethan and Gary, I love seeing them and the other kids.
“Gary is from London and Ethan from Sheffield. We met at the charity and we talk almost every day on messenger and video call. We talk about every day stuff, about school and what’s happening.”
Explaining she is very proud of her parents’ fundraising efforts for the charity, Chloe added: “I love helping out with bag packing when we do fundraisers at Morrison’s.
“It’s fun and you get to tell your story which is good. Not many people have heard of Goldenhar. Some people ask questions and I tell them about me, what I have had done, operations and stuff.”
Two years ago Chloe underwent a nine-hour operation to reconstruct her left ear and will, before her 16th birthday, have another major operation to reconstruct the left side of her jaw, which grows more slowly than the right. Her parents cannot wait to see her perfect smile.
It will be the result of several years of hardship for Chloe who had already undergone dozens of operations by 2004.
Brian added: “Chloe’s always at the mirror, she knows one day her smile will be perfect, she’s looking forward to that.”
Award Goldenhar UK recently presented the Duffin family with a plaque in recognition of their fundraising efforts