DON TALLON remembers the first day he was told his toddler son was stealing food from other children. His baby boy had been a little different growing up, but he and his wife Diane had not known why.
“We took him to Crumlin Hospital and the doctors said we were overfeeding him. He was admitted there to lose weight but he stole the other children’s food from lockers. After a month, they came up with a [different] diagnosis.”
Richard was diagnosed with Prader-Willi Syndrome, a condition where a person can never satisfy their appetite because of an imbalance in the brain.
The dangerous condition can literally see people eating themselves to death.
“Richard has always got to be restrained from access to food. If he was left alone in a buffet, Richard would eat and eat and eat as he has no satisfaction with any volume of food.”
By the time Richard was a teenager, he was stealing food on the way to school. By 18, he weighed 26 stone and his condition was near fatal. Eventually, he had to go to Britain for treatment.
Nearly 10 years on, he is now able to control it.
Curious and mindful of strangers, Alex seems like any other normal child. But the three-year-old hasn’t been able to eat since last year. A tube pumps food substances into his body several hours a day. His alert eyes betray a helplessness affecting his mind, body and growth. A condition called Mowat-Wilson Syndrome means he may never speak and is likely to be in nappies for his entire life.
Mother Annette Kinne, 47, recalls when she first heard the diagnosis.
“It really eats at you to find out what’s going on. And then getting the diagnosis, it is really tough to be told your child might not speak, that your child might never walk really well, that he’ll always need care or always need nappies.”
Mowat-Wilson Syndrome is a rare mutation of part of a gene. Alex is one of only about 150 children worldwide who have a similar disorder. The only specialist care for Alex is in Austria.
“You simply don’t know where to go,” his mother added.
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