A fitting tribute to
brave little Jordan
 Jordan had an extremely low birth weight — 3lbs 4oz — and he didn’t gain much weight for the first few weeks of his life.
Doctors at first suspected he might have diabetes, but after tests, they discovered it was more serious.
Lucilla explained, “When Jordan was just 10 weeks old, the hospital told us he had Donahue’s Syndrome, a rare genetic condition that causes stunted growth, skin and bone abnormalities and problems with internal organs. The condition is always fatal and they told us Jordan would die before his first birthday.
“I went into complete denial and refused to believe the experts. He was so beautiful and I couldn’t imagine being without him.
“Jim handled the news much better and he went on the Internet and found out as much as he could about the condition.
“We discovered that it affects just one out of every 100,000 babies and no-one with Donahue’s Syndrome (also known as leprechaunism) had ever survived for more than a year.”
Four transfusions
Little Jordan had to endure no less than four blood transfusions and two operations, including one for a double hernia.
He lost his brave battle for life last October, aged just five months and one week.
Despite this, Lucilla says she has no regrets and would gladly go through it all again.
“I wouldn’t swap the time I had with Jordan for anything” she said. “He was so brave and precious. I have hundreds of photographs and it always cheers me up to look at them.
“I had resigned myself to the fact I’d never have children so when Jordan was born, I was the happiest I’ve ever been. He was a real inspiration and after his death Jim and I were determined to help the families of other terminally-ill children.”
Two days after he died, Lucilla and Jim walked into Inverclyde Funeral Directors in Greenock to make arrangements for Jordan’s funeral.
There they met funeral director Rosaline Di Murro, who was so touched by the couple’s bravery that she helped them organise a special charity night.
Rosaline said, “I was astonished at how brave this couple were. Their baby had been taken from them just two days earlier and all they could talk about was raising money to help other children.
“We organised a bingo night at Greenock Town Hall and tickets sold out so quickly that we had to arrange another one to satisfy demand.
“I contacted various local companies who sent in donations and prizes we could use in a raffle — things like DVD players, wine and gift vouchers.”
Great work
The charity nights took place just before Christmas and almost £2000 was raised. The money will be split between our campaign to build a second children’s hospice and the Genetic Research Department at Great Ormond Street Hospital in London.
Lucilla said, “I know how much great work goes on at Rachel House in Kinross and if Jordan’s story encourages others to donate money to CHAS, I can’t think of a more fitting tribute to him.” |
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hospice@sundaypost.com
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Little Jordan is cuddled by dad Jim as 
