Its with a heavy heart I update this page.
Hannah Rose has changed the world, at 23 months 13 days old, our sweet little Hannah Rose went to heaven to fly with the Angels. Hannah in her lifetime has done more than most adults are even able to dream of doing. Along with her family, the support of Hunters Hope, & countless friends & supporters HANNAH'S LAW was passed. This law has added Krabbe & other genetic disorders to the Newborn screening in PA. HANNAH IS SAVING LIVES!!! She is saving others from going through the pain of Krabbe, the babies, their families & friends!!! Today Hannah's family had to say "see you soon" to their baby girl, they have to keep up their Hope fo Hannah & live her legacy. We as a community near and far all have come to love this sweet little girl, she is apart of us! The "Hope for Hannah Family", we will all miss her more than words can say.
On behalf of Vicki, Justin, Faith & Sam, along with their family, I thank you for your continued love & support. I thank you for your prayers, "shares", "likes", donations, and truly just being their for the family.
At this time we have decided to reactive this page to collect any donations for Hannah's Family. This will help them in preparing for Hannah's funeral and keeping her legacy alive. Thank you again for your love & support!!
Hannah Rose was born on January 15th a perfect little princess., she was growing & developing into the sweet little baby girl her parents always thought she would be. After a while Hannah's 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 Children's 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. Testing is underway to find out which form of this disease Hannah has, doctors suspect that she has Krabbe, the most rare & the worst form of this disease. As many of you are already aware, Hannah's diagnosis came in last week, & she does have Krabbe. 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 are asking for support, love, & prayers for Hannah, her parents & her sisters as they try to relearn how to live their lives with Hannah's diagnosis. Thank you all for your kindness & generosity.
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