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When he was 10 years old, a doctor told him that he would die by the time he was 34 Now, at 34, he’s still alive

A man who was told he would die by the age of 10 is now in his early thirties, thanks to one doctor and his research on treatments for a rare genetic disease.

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Thanks to one doctor and his attempts to find a cure for a rare ailment, a guy who was told as a youngster that he would be dead by age 10 is flourishing in his mid-thirties. The two are now discussing their experience and how it resulted in the creation of a medicine that can change a person’s life.

Ryan Dant was a 3-year-old boy in good health who loved baseball and playing outside in 1991. For their son, Mark and Jeanne Dant had a lot of expectations and dreams. But everything changed when genetic testing performed as part of a normal examination found that Ryan had a rare and fatal genetic disorder called mucopolysaccharidosis type I, or MPS I.

In an interview that aired on Tuesday, Mark Dant said, “We were informed the Ryan would definitely pass away by the time he was 10 or 12… so for a year we did nothing but simply sit on the floor next to Ryan’s bed at night and listen to him sleep.”

According to the National Institutes of Health Genetic and Rare Diseases Information Center, MPS I is brought on by genetic abnormalities in the IDUA gene, which can result in decreased levels or a complete lack of the IDUA enzyme. According to the NIH, big sugar molecules can amass and grow organs or other tissues without the digestive enzyme that aids in breaking them down. This can result in major medical concerns.

According to latest estimates, less than 5,000 Americans have MPS 1, and there is no known cure, TODAY said.

Ryan Dant’s symptoms worsened as time went on, Mark Dant recalled, and his “stomach became quite enormous, his liver and spleen were expanding to almost two and a half size normal, his hands started to freeze up, he would lose balance often, and he would have really painful headaches.”

He said, “Things were changing for Ryan, too, both physically and mentally, as he started to understand that perhaps he wasn’t like the other kids who could run and play.

The Dants decided to take action after observing their son’s suffering for a year. Mark Dant revealed to TODAY that he initially read a book from the library on starting a charity organization before starting to raise money.

The Ryan Foundation was established as a result of a bake sale that raised $342. The family has raised hundreds of thousands of dollars through a variety of fundraisers, including galas, golf outings, and raffles, to support any MPS I research that might help save their son’s life.

As Ryan’s symptoms got worse, his family looked for experts endlessly before finding Dr. Emil Kakkis, a doctor-scientist researching MPS 1 and enzyme replacement therapy in a facility at the University of California, Los Angeles.

But due to a lack of funds, Kakkis and his colleagues had been having trouble doing their research. When something is that uncommon, Kakkis told TODAY, “it’s difficult to secure enough research funding to perform the study.” “I was on the verge of giving up because we were out of money.”

The first phase of a long partnership to further MPS I research was launched in 1995 when the Dant family traveled by plane from Texas to Los Angeles to meet Kakkis. “Meeting Ryan, Mark, and Jeanne inspired me to focus on the true purpose of this. It is not a science undertaking. Save Ryan is a human endeavor “Kakakis remembered.

In order to continue the work of Kakkis’ team, the Ryan Foundation stepped in. In 1997, a biotech business supplied funds that enabled Kakkis to continue his clinical trials. Ryan Dant joined the group of ten young participants. Mark Dant stated, “On February 13, 1998, Dr. Kakkis, Jeanne, and I pulled the button to transform Ryan’s life forever.

In 2003, the U.S. Food and Drug Administration approved the medication used in the studies, which would subsequently be known as aldurazyme, to treat the majority of MPS I sufferers.

Obtaining an FDA-approved medicine is extremely difficult, especially for uncommon diseases when there is no expertise, method, or strategy for treating the disease, and no understanding of how to quantify the sickness, according to Kakkis.

However, he continued, “we had excellent outcomes in the first 10 patients, and… within just a few weeks, we could tell their livers and spleens were reducing, and they started feeling better.”

Ryan Dant not only outlived the 10-year forecast made for him when he was a little child, but he also went on to finish high school and college, land a job, and get married. Ryan Dant is currently 34 years old.

“Despite some ongoing medical issues, I continue to lead a full life. I don’t want my illness to prevent me from doing anything “Informed TODAY, Ryan Dant.

Despite the fact that MPS I is still incurable and that much more study needs to be done, the invention of aldurazyme has altered lives. Kakkis claimed that the success of the study, clinical studies, and FDA approval was due to the efforts of many scientists.

As Kakkis, who chronicled the journey and research in the book “Saving Ryan,” put it, “I can’t fathom doing anything more in the future than just saving more Ryans out there.”

Kakkis claimed to have attended all of Ryan’s significant occasions, and the Dant family has remained close to him. Ryan Dant declared, “Without Dr. Kakkis, I wouldn’t be living.