LEGISLATIVE RESOLUTION memorializing Governor Andrew M. Cuomo to
proclaim February 2016 as chILD 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 issues 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, it is the sense of this Legislative Body to memori-
alize Governor Andrew M. Cuomo to proclaim February 2016 as chILD Aware-
ness Month in the State of New York; and
WHEREAS, Founded in 2004, chILD is a non-profit organization which
strives to accelerate research to cure all forms of Children's Intersti-
tial and Diffuse Lung Disease and to provide compassionate support,
education, and hope to children and families affected by these life-al-
tering diseases; and
WHEREAS, chILD works closely with the Children's Interstitial and
Diffuse Lung Disease Research Network (chILDRN), a group of the top
pediatric pulmonologists, pathologists, and radiologists in the United
States, to support chILD families and to increase each child's quality
of care; and
WHEREAS, Children's Interstitial Lung Disease (chILD) is a group of
approximately 20 rare diseases which affect a child's ability to breathe
and supply oxygen to the body; these diseases have similar symptoms,
such as chronic cough, rapid breathing, and shortness of breath; and
WHEREAS, These diseases also harm the lungs in similar ways; for exam-
ple, they damage the tissues which surround the lungs' alveoli and bron-
chial tubes; sometimes these diseases directly damage the air sacs and
airway; and
WHEREAS, Since there are several forms of chILD, the outcomes differ
in severity; some children will require oxygen only while they are
asleep or ill, while others need oxygen at all times, and for the worst
cases, the child will need a lung transplant to have any hope of
survival; unfortunately, because all of these disorders are rare there
is little funding for research and very few treatment options are avail-
able; and
WHEREAS, As of 2016, chILD has not received any federal funds for
research, and there are no FDA approved drugs or treatments for any form
of chILD; and
WHEREAS, Researchers have only begun to study, define, and understand
chILD within the last decade; currently, it is not known how many chil-
dren have chILD, or how many children have each type of chILD because of
the difficulty in diagnosing this debilitating condition; and
WHEREAS, One of these complex diseases is Neuroendocrine cell Hyper-
plasia of Infancy (NEHI), a rare lung disease which starts in young
children and causes rapid, labored breathing and low blood oxygen levels
which can last for years; the cause is unknown, but chILD physicians
believe too much air is trapped in the lungs, making it more difficult
for these children to breathe; and
WHEREAS, Unlike asthma, children with NEHI do not usually wheeze or
cough, but their lungs crackle when their doctor listens to them; almost
all children with NEHI require oxygen supplementation and nutritional
support during infancy and early childhood; and
WHEREAS, Fortunately, most children with NEHI become less oxygen-de-
pendent as they get older and many are able to stop using oxygen alto-
gether; however, we do not know if NEHI will affect the child's longev-
ity or lead to adult lung disease, as children initially diagnosed years
ago are just entering their 20s; and

WHEREAS, Since 2005, there have been fewer than 500 confirmed cases of
NEHI diagnosed within the United States; however, this prevalence is
increasing rapidly as more physicians recognize the disease; and
WHEREAS, Currently, children with NEHI and other chILD disorders are
being enrolled and tracked by chILDRN in an international database; much
more research needs to be done to find the cause of NEHI, improve treat-
ment and to get answers for these families; and
WHEREAS, It is important to increase awareness of this serious and
often difficult to diagnose disease, as well as educate the public and
the medical community on chILD detection and treatment for those
affected by this condition; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim February 2016 as chILD
Awareness Month in the State of New York; 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.