Erie County Girl Becomes First Child in U.S. to Undergo Clinical Trial for Sanfilippo Syndrome
A local family continues to share the story of their daughter who was diagnosed with Sanfilippo Syndrome in 2016. Last week, they moved across the country so that she can be part of a clinical trial.
Becky and Sean Jordan of Erie County know their 3-year-old daughter, Liv, is a fighter.
In the fall of 2016, at just two-years-old, Liv was diagnosed with Sanfilippo Syndrome. It is a neurological disease, commonly known as childhood Alzheimer's.
"Liv is just a beautiful, energetic, curious, little girl right now. There's days where you couldn't tell she has this terrible disease," said Sean Jordan, Liv's Father.
In the past year, Liv has begun to regress with some of her language, and cognitive skills. She is no longer able to tell her parents her basic needs and thoughts, which only pushes her family more to find a cure for their daughter.
"We're just desperately trying to maintain the skills that she's already acquired, without her going backwards basically," said Sean.
After month's of waiting, Liv was recently approved to begin a clinical trial by the FDA. Last week, her family made the move to Oakland, California, to begin the treatment.
On Monday, she will have a cranial port surgically implanted. Soon after, she will begin weekly treatments of enzyme replacement therapy for the rest of her life.
Liv will be the first child in the United States to undergo this clinical trial.
"So we're hoping for her that this treatment stops the progression of the disease," explained Becky Jordan, Liv's Mother.
Becky and Sean say the community support has been the one consistent thing in their life over the past year.
They will continue to hold fundraisers for Liv, and the other children with this disease. The next will be on her fourth birthday on May 1st. Although normally a joyous occasion, birthdays are hard for Sanfilippo families.
"We want to just make sure we are doing all that we can for her on her birthday, and just find a positive way to celebrate it," said Becky.
The Jordan's hope to get their son, Wes, enrolled in a school out in California, and get their life back to normal. The length of the trial is undetermined at this point, but they expect to be in California for a few years.
To follow Liv's journey, 'like' her Facebook page, "A Life to LIV: Cure Sanfilippo": https://www.facebook.com/cureMPS/