Welcome to all Hannahs new followers. I wanted to give you a brief background of Hannahs story. Hannah Rose was born on January 15, 2013 a perfect little princess., she was growing & developing into the sweet little baby girl her parents always thought she would be. After a while Hannahs development began to slow, which Vicki & Justin just figured every baby is different & hit their mile stones at different points. They brought their concerns up with the pediatrician & they realized that she has acid reflux. Deep down inside Vicki & Justin knew the something more was going on with their little princess. Their sweet Hannah bear began developmentally regressing & after bringing their concerns to their doctor multiple times they decided enough was enough. One scary day, when Hannah was refusing to eat, they decided to take her to Childrens Hospital of Philadelphia (CHOP) after tons of tests & multiple visits with doctors they heard the most horrifying news that any parents could ever imagine hearing about their child. Hannah was diagnosed with luekodystrophy a rare genetic disease that affects cells in the brain, specifically the myelin sheath, the material that surrounds and protects nerve cells. Damage to the sheath slows down or blocks messages between the brain & the rest of the body, this leads to problems with speech, vision, hearing, movement, & mental & physical development. Hannah was diagnosed on June 17,2013 with Krabbe. As many of you are already aware. This is a devistating diagnosis for Hannah & her family. At this point Hannah & her family will be traveling to Pittsburgh to meet with Doctor Escolar who is an expert in Krabbe to get the best information available. We started this page to raise awareness of this horrible disease taking lives of children so early in life. We also are in the process of trying to pass a law that would have all babies born in PA be tested at birth for Krabbe. This law would he called Hannahs Law. Its at the senate waiting to get voted on. We are almost there:) If Hannah was tested at birth BEFORE symptoms she could of been eligible for a cord banking transplant. This isnt a cure but a treatment. But, if Hannah was tested at birth and given this transplant she could of had a chance to be a healthy 18 month old. But, now because screening wasnt added to newborn screening we are fighting for her life everyday. Thank you for joining Hannahs journey.
Posted on: Sat, 12 Jul 2014 10:49:56 +0000
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