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Madison Leigh Heflin 
Our sweet Maddie went to heaven
August 19, 2005.
You will forever be with us in spirit.
Madison Leigh Heflin
July 16, 2001 - August 19, 2005
Remembering Maddie's Birthdays...
Maddie, daughter of Jason Heflin and Laura Heflin and little sister to Taylor, was diagnosed with Krabbé disease on August 5, 2002. Krabbé is a rare, inherited disorder of the central and peripheral nervous systems. It is one of a group of genetic disorders called the leukodystrophies. These disorders impair the development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers, and cause severe degeneration of mental and motor skills.
Krabbé disease most often affects infants, with onset before age 6 months, but can occur in adolescence or adulthood. Symptoms include irritability, unexplained fever, limb stiffness, seizures, feeding difficulties, vomiting, and slowing of mental and motor development. Other symptoms include muscle weakness, spasticity, deafness, and blindness. Infantile Krabbé disease is generally fatal before age 2. Prognosis may be significantly better for children who receive umbilical cord blood stem cells prior to disease onset.
Although Krabbé disease had yet to be added to the screening panel, Maddie's Daddy knew that Newborn Screening was such an important first step in catching so many of these horrible "silent killers" of our children. One of Maddie’s many gifts while she was here on Earth was to inspire those in Kentucky to expand Newborn Screening. Before 2005, Kentucky was only testing newborns for 4 disorders at birth. However, Maddie, her Daddy, the Lazzaro family, Dr. Mabry and countless others knew that something had to change.
And, they did it! In March of 2005, The James William Lazzaro and Madison Leigh Heflin Newborn Screening Act was signed into Law by the Governor of Kentucky, expanding the State’s testing to 28 disorders and a hearing screening. This was Maddie’s Gift to every future child born in Kentucky – a lasting legacy!
For more information, please visit: www.huntershope.org
Journal
Wednesday, July 16, 2008 - Maddie's 7th Birthday Three years ago, we celebrated Maddie’s 4th birthday with a luau-themed party. Maddie was our own little Hula Girl:
And now, three year later....
Missing Maddie,
Daddy, Amy, and Taylor
p.s. Our incredibly sweet (and beautiful!) friend Marissa and her wonderful parents sent a balloon up for Maddie at the Hunter's Hope Symposium last week. Thanks Rissy!!!
Read Journal History
Hospital Information: Heaven
Links: http://www.lrc.state.ky.us/KRS/214-00/155.PDF Kentucky's Newborn Screening Bill
http://tinyurl.com/yclcnb UK Hospital Newsletter
http://www.compassionatefriends.com The Compassionate Friends Support Group
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