Gus is a happy, loving twelve-year old boy. He is in the 6th grade and he loves every minute of it. He eats more fruit than any kid we know, including lemons and limes. He loves music, dancing, his grandparents, the beach, sledding, camping, swimming, all animals, his brother and sister, all of his cousins, and his mom and dad.
When he grows up, he wants to be a Wildlife Ecologist — recently he’s also decided that he might want to live in Mexico…
…But Gus has Duchenne Muscular Dystrophy, a degenerative muscle-wasting disease and the number one genetic killer of children in the world. They tell us that Gus will be in a wheel chair by 12, that he will lose the ability to breathe on his own by his late teens and that his heart will stop beating in his mid-twenties.
We think they’re wrong, and a lot of brilliant researchers agree with us. Research is more promising today than ever before. Doctors understand DMD like they never have. Gus is in a race against DMD and we are determined to do everything we can to help the researchers who will allow him to win that race.
When Gus was born on May 10, 2005, we knew our family was complete. We had been blessed with three beautiful children and even though Gus was five weeks premature, we knew he would eventually catch up.
He was a smart and snuggly baby, late on all of his milestones, but seeming to thrive anyway. When he entered preschool, he started physical therapy to help him “catch up.”
When he was four and a half, Tonya made an appointment for him to see a neurologist. To this day, she is not exactly sure why she felt compelled to make this appointment. None of the teachers or physical therapists who worked with Gus suspected anything out of the ordinary. Perhaps she just had a feeling…
That appointment spiraled into three weeks of testing, fearing the worst, and dreading the unknown. By the time his diagnosis of Duchenne Muscular Dystrophy was confirmed, we knew it was the worst possible outcome for our son.
After the tears and shock, we started researching. What we found, was that there were numerous potential treatments and maybe cures out there, but they weren’t being funded. DMD is what is often called an Orphan Disease, meaning, “a disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.”
This prompted us to immediately begin the process of starting our own foundation to raise money and fund research. It’s our only hope to save Gus — and ALL children who suffer from Duchenne Muscular Dystrophy.
Our mission is to raise research dollars and awareness of Duchenne Muscular Dystrophy.
We are committed to funding research that will result in effective treatments in the near-term.
Our specific focus is on treatments that will preserve muscles in DMD boys while researchers continue to search for the cure to DMD.
We will work to build collaboration within the DMD community because we KNOW that we are stronger TOGETHER.
Additionally, we hope to raise public awareness through fund-raisers, family events and corporate sponsorship.