When Jon Miller, president and founder of the Network of Tyrosinemia Advocates (NOTA), learned of a family in Puerto Rico who had moved to Connecticut to get treatment for their infant, he took a special interest in them.
He’d learned that the baby Laura, was their third child born with tyrosinemia, and that the older two had died from the disease.
Tyrosinemia is an inherited disorder where the patient’s body doesn’t consistently break down the amino acid tyrosine, which is a building block of most proteins. The parents were doing everything they could to prevent Laura from sharing her siblings’ fate.
There are three types of tyrosenemia: type 1, type 2, and type 3. Among the symptoms, babies with type 1 experience slow physical development, jaundice, diarrhea, and an enlarged liver. They generally don’t survive past the age of 10–and while a liver transplant is the only current treatment, it’s a last resort because of the risks involved.
Miller, who owns an auto repair shop, also learned that the parents had bought an old used car that immediately broke down and were now alone in a strange place with little money and no transportation. He decided to take action:
he was going to provide them with a car.
But not just any car. Knowing that the family was living 400 miles away from him, and that he wouldn’t have the opportunity to service the car once it left his shop, he decided to find one that was “like new.” Shortly after his search began, one of his friends brought her 10-year-old Honda Accord in to trade it for a newer car, and Miller told her he was going to pay her for the car, and then donate it.
Miller personally delivered the car to the grateful family and hopes that their lives are on an upward trajectory. Watch this video to hear Miller describe the events that led to this happy–not ending–but beginning!
