Greg is his dad’s
driving force
 Greg’s fourth birthday is two days after the golf marathon and he’ll celebrate it in Rachel House with his dad, mum Carol and 12-year-old sister Paula. The hospice has become a second home for the little boy with a life-limiting condition so rare it is shared by only 50 people in the world. Greg suffers from Aicardi-Goutieres Syndrome, an illness about which the only thing doctors can be certain is that it offers a very short life.
AGS is a progressive, hereditary disease which only occurs when both parents have the same deficient gene. The odds against that are huge and even when two carriers have a child it’s a one-in- four chance the baby will have the condition. The Hendersons, from Newtonhill near Aberdeen, can count themselves very unlucky indeed.
The terrible symptoms of AGS include progressive degeneration and calcification of the brain, feeding difficulties and vomiting, poor vision and no speech. It is a hard road for the child and the parents. And Carol knew they were on that road almost from the start.
Screamed all the time
“Greg had great difficulty in feeding and screamed all the time,” she said. “I knew there was something seriously wrong. Yet I couldn’t convince anyone to listen — they thought I was an over-protective, over-reacting mother.
“He was five-and-a-half months old before anyone took heed of what I was saying and even then we were told very little. Doctors told us he’d have a very short life although they didn’t know what was wrong with him.”
It wasn’t until Greg had an MRI scan in September 2001 and a huge cyst was found on his brain that the Hendersons were told that it was “very likely” he had AGS. By then, they and Greg had endured some terrible times and the diagnosis, although damning, at least offered some explanation.
Carol, a teacher at Cults Academy, had been scouring the Internet desperately trying to identify what was hurting her son. “It is hard to explain how important it became to know,” says Carol. “Not that it offered much chance of improving Greg’s condition, but it meant we could tell family and friends and get some idea of his life expectancy. And that maybe, in years to come, other children in the same position could be helped.”
Carrier
It was vitally important, too, that they knew for the sake of daughter Paula. There is a 50-50 chance she is a carrier of AGS and every bit of information will influence her own decision about having children in years to come.
Paula is very much part of “Team Henderson” when it comes to looking after her brother. Mum and dad told her the seriousness of Greg’s condition from the start, and she clearly adores her little brother and loves looking after him. As does another member of the support team — six-month-old Irish setter Chance.
They say a dog is man’s best friend. Well this dog is a boy’s best friend. Carol and Victor bought Chance with Greg in mind to help stimulate his senses, but they couldn’t have dreamed it would work out so well.
Although Greg’s sight is poor, his hearing is good and he is aware of everything around him. He loves it when Chance pokes his wet nose up against him and smiles when his four-legged pal gently licks his face. When Carol and Victor put Greg down to lie on the floor, Chance will come over and snuggle up beside him for a snooze.
“Chance is very good for Greg,” agrees Victor. “Our main job now is to keep him stimulated and Chance does exactly that. Every smile is a gift and makes it all worthwhile. Greg was irritable and ill as a baby, but he’s much more contented now. He goes to nursery and although we can’t look far ahead, he’s doing fine right now.”
Both Paula and Carol’s schools have raised money for CHAS and next Sunday it’s Vic’s turn. He describes himself as an average golfer but after reading about the record attempt in The Sunday Post he was eager to take part. Along with his father-in-law Bob Young and family friend Jackie Christie he’ll take up his clubs in aid of the new hospice and even hopes to take Greg along on the day.
Still spaces available
There are still spaces available and more golfers are needed to set that world record. So if you can take part, no matter how good you are, please register at
www.worldrecordgolf.com or contact The Sunday Post. A round costs £30 or £50 depending on tee times. All proceeds will go towards the new hospice. |
You can e-mail us at:
hospice@sundaypost.com
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Carol, Paula, Greg and Chance the 
