Stoop raising awareness for Sanfilippo Syndrome

Recently, science teacher Traci Stoop and her family have been dealt with a unique and difficult challenge. Olivia ‘Liv’ Stoop is Stoop’s three-year-old niece, and like many young children, is the light of her family’s life. However, Olivia has recently been diagnosed with a rare disease called Sanfilippo Syndrome. Sanfilippo Syndrome impacts 1 in 70,000 births as estimated by Nemours Children’s Hospital and research center. Sanfilippo Syndrome is fatal and there is no cure. 

Sanfilippo Syndrome is a defect in a person’s genes that makes it harder for the body to break down and use sugar molecules, impacting organ function. Stoop described it as “similar to Alzheimer’s disease” and expressed how hard it has been for the family to cope. 

“It’s a genetic disease that’s inherited from both sides of the family, and there are currently no clinical trials, treatments, or cures,” Stoop said, “ The brutal thing about the disease is that it actually degenerates every single cell in her body, so it’s not just her brain, it’s also her respiratory system, digestive system, and her ability to walk, talk, eat, and other body functions.”

The family strongly encourages people to visit their GoFundMe, Saving Liv, to learn more about Liv’s life and consider donating. Because Liv’s condition is so rare, little information is known about it, and there has been little research for a cure. Stoop and the rest of her family believe that there is hope for Liv and that if they raise enough money, research into a cure can be done, possibly saving Liv and an untold number of other kids. 

“Just as a parent and as her aunt it would be really hard to hear that there is no hope for any parent whose child gets diagnosed with this,” Stoop said. “I think it’s extremely important that we do something, and do something soon for the future of all children that get diagnosed with this disease.”