Hope for Hannah

For: Hannah's Family
Organizer: Friends & Family of Vicki, Justin, Faith, & Sam
$12,955
of $20,000 goal.
Raised by 260 donors
64% Complete
This fundraiser is closed. Thank you for your support!

The Story

Any donations please see her new memorial donation page. https://www.youcaring.com/HopeForHannah

12/28/2014 Update:
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!!


Original Post
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. 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.

Fundraiser Updates

Posted on December 29, 2014

Posted on December 29, 2014

Its with a heavy heart we say goodbye to Hannah Rose.

Anybody interested in helping their family during this time, please see the new Memorial Fund Raiser Page  https://www.youcaring.com/HopeForHannah

Thank you again for all of your love & Support!


Posted on January 9, 2014

Posted on January 9, 2014

Thank you for all of your love & support for Hannah & her family.

We ask that you all follow our Facebook page for daily updates about Hannah.

As most of you know, Hannah has been spending the past 2+ weeks at CHOP, but is getting ready to hopefully come home tomorrow.

Again thank you ALL for your support!

Posted on September 19, 2013

Posted on September 19, 2013

Good Morning everybody, just an update on Little Hannah; she recently had to undergo surgery, Nissen, to help her with her acid reflux, which was causing her to lose weight instead of gaining weight. This surgery is helping to keep her Reflux under control so that she is able to keep more of her food down. Our little Hannah is a tiny little thing, but working hard to get bigger & stronger everyday!! 

Recently Hannah has had another Photo Shoot with ShutterbeeJ a local photography studio who is doing monthly photos of Hannah. Please look at our pictures to see some of the newest pictures of Hannah.

Also we have some fundraisers planned and some items available for purchase, I will list all of the information below for all who are interested.

Vinyl Car Stickers: Please visit  http://www.owntheavenue.com/ (Photo in Photo Section) 

T-Shirts (many sizes available), please e-mail [email protected] (Photo in Photo Section)

Please also “like” Us on Facebook https://www.facebook.com/hopeforhannahbear

THANK YOU FOR ALL YOUR CONTINUED LOVE, PRAYERS, & SUPPORT!!! It truly means so much to Hannah & her family!!!

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