LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim March 11, 2012, as Epidermolysis Bullosa Awareness Day in the
State of New York, more commonly known as Butterfly Children Awareness
Day, in an effort to raise public awareness and understanding of Epider-
molysis Bullosa (EB)

WHEREAS, It is the custom of this Legislative Body to recognize official
days that are set aside to increase awareness of serious issues that
affect the lives of the citizens of New York State; and
WHEREAS, Epidermolysis Bullosa (EB) is a rare, genetic, connective
tissue disorder that is characterized by fragile skin and recurrent
blister formation -- inside and outside the body; today, there is no
cure; and
WHEREAS, Severe forms of EB cause patients to live with constant pain
and scarring; the worst forms of EB lead to eventual disfigurement,
disability and often early death; phenotypes and outcomes run the gamut,
from mild to severe; the more severe cases cause fatalities in the first
year of life, and in many cases, children who suffer from the more
severe forms do not live into their third decade of life; and
WHEREAS, There are three types of EB, all caused by a different genet-
ic mutation: EB simplex (EBS), Junctional EB (JEB) and Dystrophic EB
(DEB); EBS is the mildest and most common form of EB, while JEB and DEB
are relatively less common and affect the patient more severely; and
WHEREAS, It has been estimated that one out of every 50,000 live
births is affected with some type of EB; the disorder occurs in every
racial and ethnic group throughout the world and affects both sexes
equally; and
WHEREAS, The only treatment for EB is daily wound care, preventative
bandaging and pain management; the simple act of bathing is a tortuous
process that may take more than three hours when children are often
bathed in a diluted bleach or vinegar solution to fight the ever present
threat of infection; and
WHEREAS, EB has a long list of secondary complications including
anemia, growth retardation, infection, bacterial sepsis, renal failure,
cardiomyopathy, corneal abrasions, malnutrition, premature tooth decay
and squamous cell carcinoma; and
WHEREAS, With skin as fragile as a butterfly wing, EB patients are
dubbed "Butterfly Children"; on the outside, physical wounds prevent
them from normal daily activities enjoyed by other children; the slight-
est friction produces agonizing wounds that can cover up to 75% of their
bodies; and
WHEREAS, There is a frightening lack of institutional knowledge; in
other words, most physicians, nationally and internationally, are
unaware of the disorder and its complexities, thus resulting in less
than optimal treatment options for even the most common secondary
complications; and
WHEREAS, Due to public and private insurance coverage limitations,
caregivers may lack adequate wound care supplies that are essential in
not only preventing infection and supporting wound closure, but also
preventing new wounds from everyday activities, such as wearing cloth-
ing; many surgical procedures are only performed safely in three or four
hospitals in the United States; and
WHEREAS, Researchers from around the globe are investigating new ther-
apies to treat and cure EB, thereby leading to a better quality of life;
and
WHEREAS, Four-year-old Butterfly Child, Rafaella (Rafi) Lily Kopelan,
who is a resident of the Upper West Side of Manhattan, was diagnosed

with a severe form of Recessive Dystrophic Epidermolysis Bullosa at
birth; and
WHEREAS, Rafi Kopelan was the eighth child in the world to undergo a
stem cell transplant as part of a clinical trial to treat her EB, which
has led to her ability to produce the protein (collagen type VII) which
she was unable to produce before the procedure; and
WHEREAS, "Rafi's Run" will be held on March 11, 2012, in Riverside
Park to provide financial support for the research into a cure for EB,
in an effort to aid Rafi Kopelan and other Butterfly Children; and
WHEREAS, It is imperative that there be greater public awareness of
this serious health issue, and more must be done to increase activity at
the local, State and national levels to support the patients as well as
their families; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim March 11, 2012, as
Epidermolysis Bullosa Awareness Day in the State of New York, more
commonly known as Butterfly Children Awareness Day, in an effort to
raise public awareness and understanding of Epidermolysis Bullosa (EB);
and be it further
RESOLVED, That a copy of this Resolution, suitably engrossed, be tran-
smitted to The Honorable Andrew M. Cuomo, Governor of the State of New
York.