03 Jun Trike target for boy with rare condition
A WELCOME from Aaron Armstrong usually means a kiss on the hand then the friendly four-year-old will follow up with a broad smile.
Nothing it seems can ever keep the curly-haired tot down for long – not even the series of gruelling operations endured in his short life.
The only child of parents Elaine, 47, and 44-year-old Alan, Aaron was born with an extremely rare condition called chromosone 8p deletion.
He is one of just a handful of youngsters in the world with the genetic disorder, which causes development delay, including growth, heart and facial defects.
A scan soon after he was born showed that Aaron had a hole in the heart and, at just six months old, he underwent eight hours of open-heart surgery.
He was fitted with a mechanical heart valve and a pacemaker but was left with respiratory problems. He was 14 months old before he was finally able to go home from hospital for the first time and, in January 2013, we covered the story.
By then, the little fighter had undergone nine life-saving operations in the paediatric intensive care unit of the Freeman Hospital in Newcastle.
He had improved enough to be cared for by Elaine and Alan with the help of a ventilator and feeding through a tube.
And his homecoming was a huge moment for them.
Alan, who serves with the parachute regiment, and Elaine, a practitioner nurse, were delighted at how their son was interacting with them and was full of smiles as soon as they woke him each morning. And he’s gone on to delight them even more.
“His condition is really rare,” said Elaine. “He’s on lots of medication – seven a day – to help his heart, and has gastric problems.
“But he’s always really happy.”
And guaranteed to bring an even bigger smile to his face is the trike which the Sunshine Fund’s Go Bananas appeal is out to raise money for this June.
Aaron is one of 10 children set to benefit through the month-long fundraiser which has set its highest ever target – £60,000.
The “kitten trike”, a £1,046 piece of specialist equipment, will mean a huge boost to Aaron’s development and will also enable the family of three to have some outdoor fun together.
By linking up his trike with his dad’s bike, he will be able to join his parents on cycle rides in the countryside around their home in Rowlands Gill, Gateshead – and it also will give him a rare sense of freedom.
“I know he will love it,” said Elaine.