A local family needs support from the community more than ever right now as the life of an almost four-year-old boy depends on it.
Geoff and Leslie Aubin have been experiencing every parent’s worst nightmare watching their son, Avery, who will be turning four on July 31, battle Hunter syndrome (MPS II). The rare disease caused by a missing enzyme doesn’t allow little Avery’s body to break down certain complex molecules and therefore they build up in harmful amounts.
The highly progressive disease, which has already taken so much from Avery, requires him to be on the second most expensive drug in the world. Those affected by Hunter syndrome are usually in a palliative state by the age of six. (Back in February, Huntsville Doppler profiled Aubrey as an extraordinary person and to bring awareness to Rare Disease Awareness Day.)
Avery’s mother, Leslie, says there’s been some ground-breaking headway in finding a cure, but that cure comes at a high cost. The family is currently trying to raise $10,000 in pledges and will participate in the Toronto Waterfront Marathon in Toronto on October 22. The Issac Foundation, an organization that funds innovative research projects that aim to find a cure for MPS diseases, is hosting a Run for the Cure event that will be held in conjunction with the marathon.
Avery has been through multiple surgeries, blood and brain transfusions. The cure for his deadly disease comes with a high cost of $2.5 million.
“A cure has been developed and it’s sitting in Ohio at Cincinnati Children’s Hospital. They know it’s a cure on animals, and they’d love to start the trial on children. But it’s up to the families to raise $2.5 million in order to fund this clinical trial.”
The Aubins have teamed up with other families all over north America to raise funds through the United States-based organization Project Alive. The organization is holding The 100 Family Challenge, in which families affected by Hunter syndrome have been challenged to each raise $10,000. To date, about $400,000 has been raised.
The reason why this is so important now is because Avery is turning four on July 31 and when he was diagnosed two years ago we were told sometime after the age of four some of the really bad effects of the disease will start happening. He could lose every ability he’s learned up to this point and it will happen fast. We need to get these trials on the go for a cure as soon as possible.
Leslie stated that with Avery’s birthday around the corner, friends and family have been asked to make a pledge to the upcoming run in lieu of buying birthday presents.
“If Avery was able to talk well enough that’s what he would want; the chance at a life rather than toys,” said Leslie.
Avery is currently receiving enzyme replacement therapy and is also enrolled in a clinical trial at SickKids Hospital in Toronto in which an experimental drug is injected into his brain once a month.
“The sooner we can start raising funds the sooner we can get our hands on the cure,” said Leslie.
To make a pledge to the Aubins for the upcoming Run for the Cure in hope of getting Avery the cure for his disease, please visit the fundraising page here.
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I understand blood transfusions. Please explain ‘brain transfusions’.