It’s difficult to imagine what it’s like to receive a life-threatening diagnosis for your only son.
Mark and Jeanne Dant of Texas were in that position back in 1991, when a routine doctor’s appointment for their 3-year-old son lead to genetic testing. Ryan Dant was diagnosed with a rare genetic condition called mucopolysaccharidosis type I, or MPS I.
People with MPS I aren’t able to make a digestive enzyme that breaks down large sugars, causing a build-up of sugar molecules that leads to serious medical problems. Ryan’s symptoms ranged from a constant severe headache to swollen internal organs, including his liver and spleen. His stomach distended to more than twice its normal size, and he often lost balance and suffered stiffening of the hands and limbs.
Sadly, there is no known cure for MPS I, which affects fewer than 5,000 people in the United States. Mark and Jeanne were devastated when doctors said Ryan likely wouldn’t live past his 10th or 12th birthday, but they still had hope that they could find a cure.
After reading a library book about starting a nonprofit, Mark decided that the first step to helping his son was raising money. The first fundraising event was a simple bake sale that pulled in $342. Encouraged, Mark and Jeanne started The Ryan Foundation to fund medical research to help Ryan and other people with MPS I.
While the fundraising efforts were a success, Ryan’s health got worse and worse as they continued to search for a doctor or researcher who could help.
Enter Dr. Emil Kakkis, a Los Angeles, California-based physician-scientist who was studying MPS I and enzyme replacement therapy in the early 1990s. Dr. Kakkis was making progress but was running out of funding, especially since MPS I is so rare. When he met the Dant family, it was a match made in heaven!
THWith help from The Ryan Foundation and a biotech company that also provided funding, Dr. Kakkis was able to continue his research with new vigor. This time, it was personal — he was no longer fighting an enzyme problem, he was fighting a disease to help Ryan!
“Meeting Ryan and Mark and Jeanne gave me an inspiration as to what this was really about,” Dr. Kakkis recalled. “It’s not a science project. It’s a human project to save Ryan.”
In 2003, Ryan and 10 other children participated in the clinical trials of a drug called aldurazyme. This drug has since been approved by the U.S. Food and Drug Administration to treat people with MPS I.
“We had great results in the first 10 patients, and … after only a few weeks, we could see their livers and spleens were shrinking, and they started feeling better,” said Dr. Kakkis.
Twenty-two years later, Ryan still receives this life-changing medication once a week for four hours. Thanks to Dr. Kakkis’s research and his parents dogged refusal to give up, he has graduated from high school and college, gotten a job, and married the love of his life. He is 34 years old and still thanks his lucky stars for Dr. Kakkis every day!
“There are still some medical challenges, but I’m living life to the fullest,” Ryan said. “I don’t want to have this disease hold me back from accomplishing anything.”
Ryan and his family are now close friends with Dr. Kakkis. The physician has attended every big moment in Ryan’s life, from graduations to his recent wedding to wife Silvia. He remains more dedicated to his research than ever before and hopes to save even more lives in the future.
Ryan’s parents found a way to bring about the change they needed to see in the world, and now their mission to save their son will help countless others suffering from a rare disease!
Share this story to celebrate Ryan beating the odds, and to Dr. Kakkis who gave Ryan a second chance at life.
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