According to a story from People, parents Lester and Noreen Jessop from Utah recently discovered that all three of their children have a rare, life-threatening disease called pantothenate kinase-associated neurodegeneration. Their firstborn child, Daron, wasn’t developing in pace to other children his age and both Lester and Noreen knew something was wrong. Time passed without an answer, and then the couple had twin baby girls. They hoped the girls would progress more normally, yet they soon found out they were in sync with their brother, developing behind schedule.
Pantothenate kinase-associated neurodegeneration, also known as PKAN, is a rare genetic disease that affects one’s functionality. Most of these children experience visual, speech, intellectual and physical impairments. Children diagnosed with the disease often do not see their 11th birthday.
Receiving this news was absolutely devastating to the couple. Not only did they have to experience seeing their children lack development, but they knew it was very likely they wouldn’t live long lives. No matter how hard they tried to stay strong and battle these emotions, they were real and they weren’t fleeting.
Using those emotions as fuel and motivation, Lester and Noreen decided they would do whatever it takes to find a cure. After conducting tons of research, they came across an organization that gave them hope. Spoonbill Foundation is a nonprofit that supports PKAN research and drug development. They have created a drug that could potentially halt the degenerative symptoms from the disease. The only problem is finding the funding.
Once the couple learned of their mission, they knew they were the people to do something about it. They are now on a mission to fundraise $2 million dollars that would be needed to develop this drug and provide it to all the children who need it. They set up a GoFundMe page and have taken their story to social media, in hopes to bring about awareness. Not only do they want to spare the lives of their three children, they want to help as many other children they can also battling the disease.
If you’d like to donate to their cause, please visit here.