HARRISBURG– This week, the State House unanimously passed H.R. 915, which deems June 4 as Batten Disease Awareness Day. Sponsor, State Rep. Perry Warren recognized the day that will now raise awareness for patients of the disease in Pennsylvania.
Batten Disease is a fatal disease that primarily affects children. The neurodegenerative disease affects the nervous system and usually appears in early childhood. Rapid vision loss is often the first sign of Batten Disease. As the disease progresses, patients usually have seizures and impaired motor skills.
The disease is caused by a hereditary genetic mutation. Patients of Batten Disease have a low life expectancy.
“Batten Disease is a degenerative neurological disease that leaves children blind and bedridden with a life expectancy of eight to twelve years,” Rep. Perry Warren said.
“Those with Batten Disease are unable to produce an enzyme needed to clear toxins from the brain. Without it, permanent brain damage occurs that affects the child’s ability to talk, walk, see, and even, eat. Its onset usually occurs between the ages of two to four years.”
The resolution is in memory of Drew Ferrandino, a Newtown boy who passed away from the disease in 2014. Warren said Drew was the sibling of
Drew Ferrandino passed away from the disease at age 12. Before Ferrandino’s passing, his parents started Drew’s Hope, a charity dedicated towards finding a cure for the disease. Katie and Anthony Ferrandino, Drew Ferrandino’s parents, were in attendance at the resolution signing, and was recognized by the Speaker of the House and those in attendance with a round of applause.
There is no known cure for Batten Disease, but Rep. Warren said he hopes by raising awareness about the disease more treatment options can become available.
“It’s our hope and Drew’s Hope, that by raising awareness of this horrific disease that we may succeed in treating, preventing, and someday, curing Batten disease.” Warren said.
In April 2017, the Food and Drug Administration approved the first treatment for Batten Disease.
WBCB’s Katie Donahue contributed to this post.