Finding cures for children's genetic diseases


Young business couple donate proceeds to medical research


A young couple, who have just bought their first butcher, will donate proceeds from their Christmas “Ham Run’’ to Children’s Medical Research Institute because they believe that science has changed their two-year-old son Hugh’s whole world.

“People ask us why we’re giving away money,’’ Michelle Jensen, from Westridge & The Ridge Meats in Toowoomba said. “We believe in the more you give, the more you get back. If we won lotto we’d give all the money to scientific research. Every little bit helps.’’

Michelle and Luke Jensen don’t want any other parents to experience what they went through during the first two years of Hugh’s life.
“My philosophy is, if we just help one family get an earlier diagnosis, it’s worth it.’’

Michelle said the only thing different about Hugh, at birth, was that he had an oversized head and his lungs collapsed almost immediately. She said he rapidly lost weight, had problems with hearing and making sounds. No-one could diagnosis what was wrong with Hugh, and Michelle took the blame.

“I thought I was going crazy,’’ Michelle said. “I said to one doctor, ‘if I’m the problem then fix me’. Finally, one doctor saw how my heart was breaking and he said, ‘we’re going to find out what’s wrong’.’’

Genetic testing was done and the family finally had a diagnosis.

“The tests showed he had a deletion on the sixth chromozone,’’ Michelle said. “Not many people in the world have been diagnosed with this condition so there isn’t much research into it and it doesn’t have its own syndrome.’’

The family quickly found an endocrinologist, a geneticist and paediatrician. They were told by the geneticist that a diagnosis was good news.

“He told us, ‘I tell people daily that their kids are terminal’,’ Michelle said. “This is so rare that the only person who can you tell you what will happen to Hugh, is you. We don’t know what the future holds but we understand more about him.’’

Hugh is developmentally delayed, but Michelle is determined to improve his outcomes.

“We were told, ‘if you can control Hugh’s environment and give him every opportunity to thrive, then he will,’’ she said. “We don’t disable Hugh, we enable him and focus on what he can do.’’

Michelle said having Hugh diagnosed just before Jeans for Genes Day in August made them more determined to fundraise for Children’s Medical Research Institute - which organises the event.

“The way I see it, this is our opportunity to help Children’s Medical Research Institute,’’ she said.
“We want to help fund the science. My brother had a brain tumour when he was a baby, he had experimental therapy, and he just got married at 36. We need to fund that same kind of science. Imagine what can be found out in another 10 years.’’

Westridge & The Ridge Meats deliver Christmas hams across south-east Queensland in the first few weeks of December and, this year, $5 from every one sold will go to Children’s Medical Research Institute.
Hugh will help his grandfather, Mark Mingay, on the Ham Run.

“He is such a beautiful little boy,’’ Michelle said. “I think this was all meant to be. He has such a beautiful energy, he was just meant to be in our family. He knew that we wouldn’t stop until we were on the right path. Together, the three of us, we got there in the end.’’

To order a Christmas ham visit!