Central Kentucky toddler battling extremely rare aging syndrome
LOUISVILLE, KY (WAVE) - Progeria Syndrome is a fatal condition that causes rapid aging in young children. There are only 14 diagnosed cases in the United States. One of them is a toddler in Lexington, Kentucky. Since the diagnosis, Zach Pickard's family and friends have been on a mission to save his life by raising money for promising new research. But as WAVE 3 Health and Medical Reporter Lori Lyle explains, without the funding, treatment may not come in time.
Just like most parents The Pickard's only hope was for a healthy a child.
"I think every parent wants their child to be healthy. And that's what we wanted too," said Tina Pickard, Zach's mother.
Zach was low weight at birth and had prominent veins but there were no initial signs of anything serious.
"At three months, he had these bumps on his shins that were kind of questionable," said Brandon Pickard, Zach's father.
At 11 months, doctors diagnosed Zach with Progeria, a diagnosis so rare that Zach is one of only 14 children in the country with the disease. Progeria steals childhood in almost every way, except for their mentality.
"They do have all the same childhood hopes and dreams and thoughts so they still have their children's mind," says Tina.
Progeria causes rapid aging, lose of hair, wrinkling skin, and stiffening joints. Their hearts become weak and diseased. The average life span is just 13 years. The Pickard's immediately began researching the disease on the internet.
"They are the only foundation in the world that is committed to finding a treatment and cure for Progeria, so we knew that would be our lifeline," Tina explained.
The group Tina found is called The Progeria Research Foundation. It was formed in 1998 by parents of another child diagnosed with the disease. Audrey Gordon is the president of the Foundation. She told us why the family took on such a project.
"They found nothing was going on. There was no research. There was no organization that was putting forth and, you know, fighting for these kids," Gordon said.
In 2002, the Progeria Foundation's scientific team was able to isolate the gene and the cause for the disease.
"It was this mutant protein that was sticking to the cellular wall. Well, there's a drug that already exists that's being used in some certain cancer trials and that's its job to not allow that protein to stick," explained Gordon.
The first Progeria clinical trial is currently underway. The trial is testing the medication on 28 children in 16 countries. It has enormous potential to delay and even reverse the disease in process. But the foundation still needs funds to finish the trial, so the Pickard's are taking their story public in order to draw attention to their cause.
"It's hard to go public and it's hard to share your story because this is our son. And this is the closest to your heart as you're going to get. It's hard to do," said Tina.
The Pickard's have held bake sells and autograph raffles and even started a Progeria Foundation Chapter in Kentucky.
"I have no doubt we're going to find treatments and a cure. It's just a matter of when, and we are in a race against time," Gordon said.
Two recent drug trials in animals, one with the National Health Institute shows prevention and reversal of Progeria symptoms. It is the same medication being tested on the children with just a year to go. Until a treatment is found the Pickard's are just thankful for the joy Zach brings into their lives.
"He's like a little piece of heaven that lives in our house. You just have to accept and love every second you have with them. That's what I think people learn from Zach," Tins says.
To learn more about Progeria and the clinical trials and how you can help click the links below: