By DANIELLE GALVIN
AT just one-year-old, Rhylan has 18 doctors and specialists he sees regularly to help make his life a little bit easier.
He was born with six fingers and toes and at 12 days old he underwent major surgery to repair three defects in his tiny heart. It was three weeks after his birth that he was diagnosed with the incredibly rare Smith-Lemli-Opitz Syndrome (SLO) and doctors believe he is one of 12 in the country.
A ‘Thoughts for Rhylan’ Facebook page and website set up by some friends of the family is helping to raise money to purchase a new car for the family.
Pakenham mum Barbara Lukcy said she wanted to help in any way she could to make Rhylan’s constant trips to doctors and appointments more comfortable.
His mum Sharna Major said the plans for a fund-raiser on Saturday 3 May at the Croc’s Playcentre in Pakenham were going really well and she was touched by the support.
“Barbara is in control of it all and I think she has gone to nearly every business in Pakenham,” Sharna said.
“It’s just amazing.”
Rhylan is the youngest of four and is “loved and adored” by his siblings.
He has low muscle tone, which makes eating difficult, and spent the first five months of his life being fed through a nasogastric tube before having a PEG inserted.
The idea behind the fund-raiser is to raise enough money to replace the small family car which may eventually be able to fit a wheelchair or larger equipment as Rhylan grows.
But it’s also about raising awareness about the chromosomal condition and generating some ideas for a foundation to support the families of children like Rhylan.
His condition means he is affected by a lack of cholesterol.
“He’s doing quite well, he’s just starting to hold his head up which is huge for him,” Sharna said.
“He is the youngest and his siblings love him, they just adore him.
“They just fell in love with him when he was born.”
The Family Fun Evening is on at the playcentre on Saturday 3 May, from 5.30pm to 8.30pm.
All proceeds will go towards Rhylan’s family to assist with his care.
Any businesses who want to lend support can get in contact through Facebook www.facebook.com/Thoughts4Rhylan or the website thoughtsforrhylan.wix.com/thoughts-for-rhylan
