25 years of Jeans for Genes!
2018 marks the 25th anniversary of Jeans for Genes, and this year’s goal is to reach $25 million for ongoing essential research into cures and treatments for children’s genetic disease. You may well know a child who is affected by a genetic disorder. We know two! They’re very precious to us, and they’re involved in this years campaign!
Henry Gowans, age 4, and his sister Rosalie, almost 2, are typically playful, curious, fun loving kids. Except that they have a very rare metabolic disorder, LCHAD deficiency. Unless you know us, you’ve more than likely never heard of it. And we wish we’d never heard of it.
Because of a tiny little flaw in a tiny little enzyme, their bodies can’t use fat for energy, which has huge implications.
It means they must never fast. Just think about that for a second. How do you manage a kid who refuses to eat, or has no appetite because they’re running a fever? Never mind one who must not fast? What about our routine overnight fasts during sleep? As Henry and Rosie sleep they’re attached to a pump which supplies them with the external source of energy they need to thrive. If they stray from this their lives are at risk. It also means the most extreme lowest of low fat diets. Almost zero. If they stray from it their health is at risk.
Did you know there are more than 6000 genetic diseases? The beautiful, cheeky kids who suffer from genetic diseases endure hospital stays, constant monitoring, medications, therapies, operations…. You can read some of the moving personal stories here.
1 in 20 kids need your help!
This 25th anniversary year, we’re getting behind The Children’s Medical Research Institute to help them raise as much money as possible so kids like our beautiful Henry and Rosalie can have a healthy, happy future. Will you get behind them too?
Fight with them! Fight for them!
Help find cures for children’s genetic diseases! Please support this year’s CMRI Jeans for Genes campaign.