Hope For Hannah

 Hope For Hannah

Hannah Rose was born on January 15, 2013 a healthy baby girl. In her short 5 months of life, doctor's have discovered Hannah has Krabbe Disease.

If you'd like to share a personal message with Hannah and her family please feel free to e-mail them at: hopeforhannahbear@gmail.com

Hannah's Story:

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. 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. 

This was Hannah before Krabbe took her brain over. Her smiled brighten a room, her giggle made you laugh. What I would do to see her smile or giggle again. —

August 16, 2014:  I've been having some pretty good days. Let's hope it stays that way. Mommy loves that my hair is getting longer she can do different things with it. We enjoy having these days where we dress me up :) 

I hope everyone enjoys their Saturday

Many of you ask for shirts to help spread awareness and help Hannah.

Hope For Hannah 

Sizing Tip: Style runs small, you may want to consider sizing up.