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House Co-Sponsorship Memoranda
House of Representatives
Session of 2015 - 2016
Regular Session
MEMORANDUM
| Posted: | December 30, 2014 05:57 PM |
|---|---|
| From: | Representative Angel Cruz |
| To: | All House members |
| Subject: | Hannah Ginion Condolence Resolution |
| In the near future I will be introducing a condolence resolution honoring the life of Hannah Rose Ginion who tragically passed away on Sunday, December 28, 2014. Her courageous battle with a rare degenerative disorder inspired me to introduce legislation this past session that has improved newborn screenings in Pennsylvania. Hannah would have turned two on January 15, 2015 but suffered from Krabbe disease (pronounced Crab A), which affects the nervous system. Infants born with Krabbe appear normal at birth. Symptoms begin between the ages of 3 and 6 months with irritability, excessive crying, fevers, limb stiffness, seizures, feeding difficulties, vomiting, and slowing of mental and motor development. Early detection and treatment result in the long-term effects of Krabbe and other similar diseases being less detrimental to children and their families. Regrettably, due to a lack of mandatory screening for Krabbe and other Lysosomal Storage Disorders (LSDs) in Pennsylvania at the time of Hannah’s birth, her parents, Justin and Vicki did not have the opportunity to receive an early diagnosis. The 28th of December was a sad day for all who have been inspired by this little girl and by the commitment and unyielding love of her family, but we should all be grateful to have been a part of Hannah’s legacy. Thanks to her story and the stories of children who were, and are battling Krabbe disease, my legislation which requires hospitals in Pennsylvania to screen newborns for Krabbe and five other LSD’s passed both the House and the Senate unanimously. This bill was signed into Law by the Governor in October. This is Hannah’s legacy. Act 148 is a reminder that the children and families who fought and are still fighting Krabbe disease are valuable and that their story matters. Thanks to Hannah and her family, children across Pennsylvania now have a better chance at a healthy life. Please join me in honoring the life of Hannah Ginion by co-sponsoring this condolence resolution. Thank you in advance for your consideration. If you have any questions or concerns, please contact my Harrisburg office at 717-705-1925. |
Introduced as HR146