Introducing Melissa Froio

"A Life Well Lived Is Worth Remembering"

This website and fund raising efforts are dedicated to our daughter Melissa Lynn Froio who was 14 when she lost her 10 year battle with Batten Disease on March 18, 2009.

Batten Disease (Neuronal Ceroid Lipofuscinoses (NCL)) is an inherited, degenerative, neurological disease that mostly affects young children. In a disease of this type, each parent carries a copy of a specific gene that is defective. A copy of this gene, from each parent, is passed onto the affected child. At this time there is no cure or treatment to stop the progression of the disease. Unfortunately, this disease always results in the death of the child at a relatively young age. Please refer to our information page for more information on the different types of Batten Disease.

Up until the fall of 1998, Melissa seemed to be progressing normally. She could do all of the things that are expected from a normal four year old (walk, run, talk, climb, count, etc.). But suddenly she stopped developing and started having seizures. These seizures would cause Melissa to black out for a split second and fall to the ground, usually hitting her head. These seizures led us to seek medical attention at The Children's Hospital of Philadelphia In working with the fine professional staff at Children’s, Melissa was to undergo a number of medical procedures and two minor operations to determine the cause of her seizures.

Finally in April of 1999, it was confirmed that Melissa had the Late Infantile Variant form of Batten’s Disease. Melissa’s eventually lost all of her fine motor skills including her ability to see, eat, walk, and talk during the 10+ years of suffering with this disease. . Melissa's diagnoses lead us to enroll her at St. John of God School in Westville Grove, NJ. This is a specialized school that helps children with all types of learning disabilities. We believed the love and care Melissa received from St. John of God allowed to live past the average age of kids with this disease.

In searching for information about Batten Disease, we found an organization dedicated to provide support to families who have children affected by Battens'. This organization is the Batten Disease Support & Research Association (BDSRA). The BDSRA also provides financial assistance to researchers who are dedicated to finding a cure for Battens' as well as supporting affected families. The BDSRA receives most of its funding from its membership and charitable foundations such as ours. Since Batten’s Disease is very rare (less than a 1000 confirmed cases in the US) the US government does not provide a large amount of funds for researchers who are trying to find a cure for this disease.

Since joining BDSRA and learning about their mission my wife and I decided to form this charitable foundation in Melissa's name. This foundation is called “The Melissa Froio Foundation”. The main purpose of the foundation will be to raise money to help find a cure for this disease and to provide some financial support to St. John of God. All proceeds from our fundraising efforts will be given to BDSRA and St. John of God Community School.

On this web site you will find a donation form that can be filled out if you choose to donate and additional links that will help to provide you with more information on Batten’s Disease and the BDSRA.

My wife and I hope you decide to donate this cause.
Thank You
Gregg and Paula Froio