Please
allow me to introduce you to our daughter Melissa Lynn
Froio. Melissa is a 12 year old girl who resides
in Gloucester Township, NJ. Unfortunately, Melissa
is suffering from a disease known as Neuronal Ceroid Lipofuscinoses
(NCL) more commonly known as “Batten Disease”.
Batten Disease 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 under go 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.
Over the past three years this disease has taken away most
of Melissa’s fine motor skills including her ability to see,
eat, walk, and talk. Melissa's diagnosis 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. Since starting at St. John’s,
Melissa has become more alert to her surroundings and more
social even as this disease progresses.
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. Since Batten’s Disease is
very rare (1000 confirmed cases in the US and 1300 worldwide) 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 this organization and learning about their mission my wife
and I have decided to form a 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. These donations in turn will be sent to
both the BDSRA and to the St. John of God 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 |
|
