A Florida mother is speaking out about a rare genetic disorder, called Sanfilippo Syndrowm, which affects her two children.
A Florida mother is speaking out about a rare genetic disorder affecting her two children.
The condition is called Sanfilippo Syndrome. Over time, it robs the children of the ability to walk and talk.
Jessica Davis is the mother of Ross and Meredith, who have both been diagnosed with Sanfilippo.
"It's a neuro-degenerative disease where they are presented normal at birth until usually between the age of 3 to 5, and then they rapidly decline after that," explained Davis.
She says Ross was a typical five year old until the symptoms of Sanfilippo kicked in.
"Just after his fifth birthday, he was playing a season of t-ball, and he went from being completely normal to not being able to hit the ball off the tee," said Davis.
Shortly after Ross was diagnosed, his sister, Meredith, was tested and was diagnosed with Sanfilippo as well.
Health Connection
Get connected to a healthier life.
Meredith was accepted into a clinical trial. That clinical trial helped stop some of the progression of Meredith's condition. Then, budget cuts caused the clinical trial to be cancelled. After that, Meredith ended up in the Pediatric Intensive Care Unit at Gulf Coast Regional Medical Center for treatment of a complication she developed.
Davis said she was astounded at the level of care Meredith received. "Dr. Hervie greeted us, and he was an angel," she said. "I can't even describe what he was to us in that moment."
Dr. Peter Hervie wanted to help the family and learned as much as he could about Sanfilippo.
"There are people going through difficult medical conditions silently and anything we can do as individuals to make their lives a little bit bearable,
[there's] a great appreciation from the family," said Dr. Hervie.
Davis says she would gladly take away the pain her children face on a daily basis.
"I never thought I would say give me somebody's pain, but I would take every bit of it away if God would take me today and allow them to be healed," she said with tears in her eyes. "I would happily go in their place."
Currently, there is no cure for Sanfilippo.
