*PLEASE NOTE THAT THIS EVENT HAS BEEN RE-SCHEDULED FROM ITS ORIGINAL DATE OF APRIL 15TH DUE TO RAIN.*
Help raise money and awareness for Hannah and Leukodystrophy. Raffle tickets for gift baskets and a TV will be available for purchase and 100% of the money raised will go directly to Hannah Bear. DJ Jeffrey Weiman will be there with his music, dancing and fun and 20% of the sales at the JoJo’s window from 6-9 go to Hannah Bear as well. Come out and support this amazing little girl.
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, but her parents 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 had acid reflux. Deep down inside her parents knew that 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 myelin sheath slows down or blocks messages between the brain and the rest of the body, which leads to problems with speech, vision, hearing, movement, and mental and physical development. Hannah was diagnosed on June 17, 2013 with Krabbe Disease. This was a devastating diagnosis for Hannah and her family. Every day is a struggle for Hannah and her family, but they do their best to live each day to the fullest and enjoy every minute they have together.