LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to declare
May 2014, as ROHHAD Disease Awareness Month in the State of New York

WHEREAS, It is the custom of this Legislative Body to recognize official
months that are set aside to increase awareness of serious illnesses
that affect the lives of citizens of New York State; and
WHEREAS, Attendant to such concern, and in full accord with its long-
standing traditions, this Legislative Body is justly proud to memorial-
ize Governor Andrew M. Cuomo to declare May 2014, as ROHHAD Disease
Awareness Month in the State of New York; and
WHEREAS, Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventi-
lation and Autonomic Dysregulation (ROHHAD) is a very rare disease with
approximately 75 cases documented worldwide; and
WHEREAS, Children with ROHHAD typically have shallow breathing that,
if not addressed, deprives the brain of oxygen which can lead to neuro-
logical disabilities, seizures, or cardiac arrest; and
WHEREAS, Currently, there is no treatment or cure for ROHHAD and the
source of this disease has not yet been determined; and
WHEREAS, Symptoms of ROHHAD, which varies for each child and are
usually misdiagnosed, generally start with rapid onset obesity in the
first two to four years of life then lead to impairment of the nervous
system and inevitably reduced lung function leaving most ROHHAD patients
unable to breathe without the assistance of a ventilator; and
WHEREAS, Unfortunately, very little research has been done due to the
lack of awareness and lack of funding as most people have never even
heard of ROHHAD; and
WHEREAS, ROHHAD Fight, Inc. is a not-for-profit 501(c)3 organization
that has been created to raise awareness and funding for research and to
help children and families who suffer from ROHHAD to pay for travel
expenses and un-reimbursed medical costs to ease the financial burden of
the disease; and
WHEREAS, Since there are so few cases and a limited number of doctors
who have heard of it, children suffering from ROHHAD often have to trav-
el to other parts of the country for proper medical attention; and
WHEREAS, Marisa Carney is a seven-year old girl, born on March 31,
2006, and was diagnosed with ROHHAD in June of 2010, at the age of four;
and
WHEREAS, Most patients, like Marisa, begin life as healthy babies but
in early childhood start to gain weight rapidly, and develop serious
breathing problems; and
WHEREAS, Marisa Carney uses a ventilator to breathe 24 hours a day,
and is limited to a 1,200 calorie diet; her father pricks her finger
every night to draw blood to test for her sodium level; her parents
spend countless hours, day and night, monitoring her carbon dioxide
levels, and making sure she is getting enough oxygen; 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 assist in research funding; now,
therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to declare May 2014, as ROHHAD
Disease Awareness Month in the State of New York; and be it further
RESOLVED, That copies of this Resolution, suitably engrossed, be tran-
smitted to The Honorable Andrew M. Cuomo, Governor of the State of New
York, and the Carney Family.