Hand of friend­ship is of­fered across wa­ter

Fam­ily’s £95k cash boost for kids liv­ing with syn­drome

Rutherglen Reformer - - News - Edel Ke­nealy

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

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