Utah Couple Learns Their 3 Children Could Die by Age 11 From Rare Disease
“We prayed they would be normal, but sometimes that is not up to us."
Noreen and Lester Jessop, of St. George, Utah, were over the moon when they welcomed their son Daron 10 years ago. But as time passed, they realized their little boy wasn’t developing like other kids and spent years trying to figure out what was wrong with him.
“I realized something was slowing him down,” Noreen, 30, tells PEOPLE. “He army-crawled everywhere, and crawled on all fours at 13 months. Not sure what was causing this development delay, we did therapies and special needs programs. [We never felt] he was at the same level as the other kids his age.”
Over the years, the couple sought several treatments for Daron, but doctors couldn’t seem to figure out what was wrong with him. Then in 2013, Noreen and Lester welcomed twin girls, Aubrey and Angie, and soon realized that the twins were developing just like their brother.
“We prayed they would be normal, but sometimes that is not up to us. After they turned 2, we could not ignore the facts,” Noreen says. “We took them to a local geneticist who very quickly had a suspicion that they could all have the same diagnosis.”
And she was right. Daron, Aubrey and Angie were all diagnosed with pantothenate kinase-associated neurodegeneration (PKAN), a rare and life-threatening genetic disorder that affects vision, muscle movement, speech and intellectual function. Doctors informed the couple that children with the disease usually do not live past 11 years old.
“The doctors told us to simply make the time count. We may not have much of it. That summer was the hardest time in our lives that I can ever remember,” the mom of three tells PEOPLE. “When we got the call that confirmed what this disease was, it was so gut-wrenching we seemed to be barely getting from day to day.”
She adds: “At first I thought I was strong, but the next day, after researching more about this disease, I sat on my closet floor and cried for hours. The kids would give us hugs when me or Lester would get emotional about it.”
Noreen and Lester set out to find a way to cure their children. During their search they learned about the Spoonbill Foundation, which supports children with PKAN and helps to provide therapy for the kids. The foundation has developed a drug that could help stop the progression of PKAN, Noreen says.
So, she and Lester have committed themselves to raising the $2 million needed to develop the drug and ultimately use it to treat their children and ensure that “no child goes untreated.”
They’ve set up a GoFundMe page for the cause and have shared their story on social media. “We are racing the clock to raise enough money to get the clinical trial going.”
Even though she’s doing all she can to save her children, Noreen says she’s always fearful of losing her little ones.
“It’s very real. This thing is serious,” she says of the illness. “You never know when the lungs will stop working or other major organs that depend on the muscles.”