PRINTER'S NO. 819
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
146
Session of
2015
INTRODUCED BY CRUZ, YOUNGBLOOD, DiGIROLAMO, DAVIS, BROWNLEE,
SCHLOSSBERG, THOMAS, HARHART, HAHN, WATSON, SANTARSIERO,
KINSEY, GABLER, DRISCOLL, MILLARD, KORTZ, MURT, BISHOP,
CUTLER, CALTAGIRONE, KIM, BAKER, J. HARRIS, O'BRIEN,
DONATUCCI, READSHAW, BOBACK, FARINA, GRELL, ROSS, WHEELAND,
GOODMAN, McCARTER AND GILLEN, MARCH 4, 2015
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
MARCH 4, 2015
A RESOLUTION
Expressing condolences upon the passing of Hannah Rose Ginion of
Levittown and honoring her life and the contributions she
made to strengthen the laws of this Commonwealth.
WHEREAS, Hannah Rose Ginion, lovingly known as "Hannah Bear,"
passed away December 28, 2014, a few weeks shy of her second
birthday; and
WHEREAS, Hannah was born January 15, 2013, a healthy baby
girl weighing 8 pounds, 11 ounces, to parents Justin Ginion and
Victoria Pizzullo of Levittown; and
WHEREAS, At first, Hannah was meeting and exceeding all of
her milestones, but at four months of age, Hannah suddenly and
inexplicably began regressing; and
WHEREAS, On June 17, 2013, five-month-old Hannah was
diagnosed with Krabbe disease at Children's Hospital of
Philadelphia; and
WHEREAS, Krabbe disease is a rare, inherited degenerative
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disorder of the central and peripheral nervous systems; and
WHEREAS, Infants born with Krabbe disease appear normal at
birth; and
WHEREAS, Symptoms of Krabbe disease begin between three and
six months of age and include irritability, unexplained fever,
limb stiffness, seizures, feeding difficulties, vomiting and
slowing of mental and motor development; and
WHEREAS, Other symptoms include muscle weakness, spasticity,
deafness and blindness; and
WHEREAS, There is no cure for Krabbe disease but studies show
that early treatment may delay its onset when detection occurs
before symptoms begin; and
WHEREAS, Hannah's parents, Justin and Vicki, began advocating
for expanded newborn screening for Krabbe disease on behalf of
their daughter and other children in this Commonwealth; and
WHEREAS, As a result of this advocacy, expanded newborn
screening legislation inspired by Hannah became law October 15,
2014; and
WHEREAS, Thanks to "Hannah's Law," infants across this
Commonwealth will have a better chance at a healthy life; and
WHEREAS, Hannah's life may have been short, but she has left
an incredible legacy and is a hero for all newborns; and
WHEREAS, The House of Representatives mourns the loss of
Hannah and extends condolences to her parents, Justin Ginion and
Vicki Pizzullo; her sisters, Faith and Samantha Dydak; her
maternal grandparents, Victoria and Vincent Pizzullo; her
paternal grandparents, Jerry Jordan and Anne Matusek; her
maternal great-grandmother, Alberta Gardner; and her paternal
great-grandmother, Annette Ginion; therefore be it
RESOLVED, That the House of Representatives express
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condolences upon the passing of Hannah Rose Ginion of Levittown;
and be it further
RESOLVED, That a copy of this resolution be transmitted to
the family of Hannah Rose Ginion as an expression of condolence
for their loss and as a token of appreciation for Hannah's vital
role in strengthening the newborn screening laws in this
Commonwealth.
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