Hope for Hannah (Hannah's Family)

Hope for Hannah

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

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.

Updates

12/29/2014
by Friends & Family of Vicki, Justin, Faith, & Sam
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! <3



01/09/2014
by Friends & Family of Vicki, Justin, Faith, & Sam
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!

09/19/2013
by Friends & Family of Vicki, Justin, Faith, & Sam

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 shirts4Hannah@gmail.com (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!!!



08/15/2013
by Friends & Family of Vicki, Justin, Faith, & Sam
Good Evening All, sorry its been so long since we have last updated you.

Hannah is doing well. Today she turns 7 months old!!! This little angel has been through so much in such a short time, but she is a true fighter & the strongest little girl!! Hannah will be going to see Dr. Escolar again in the beginning of October. & she also was fitted for a kid cart a couple weeks back, this is a specialized stroller that will help Hannah be comfortable while going from place to place! 

We have heard some amazing news, that PA is trying yo pass more newborn screening laws, with the help of all of you, along with Hunter's Hope, we are trying to get PA to pass.......HANNAH'S LAW!!!! This will hopefully add many new tests to the newborn screenIng list, to help save the lives of so many children! Hannah has truly touched so many lives & is helping spread awareness to people all over the globe!!!

We would also like to that you all for your continued, love, prayers, & support!! We had a very successful fundraiser & have more to come! Please check out the hope for Hannah Facebook Page for more details & information about the events!! https://www.facebook.com/hopeforhannahbear

Thank you again for all your support!!! Hannah is truly a blessing to all of us! 

--Elise


07/23/2013
by Friends & Family of Vicki, Justin, Faith, & Sam
On behalf of Hannah & her family, I would like to share their deepest gratitude to each & every one of you!!!! We have been able to ease the financial stress that comes with caring fosick very ill little girl.

Hannah has been doing well, she goes to different therapies every week, & the medication that Doctor Escolar has prescribed seems to really be helping Hannah. Please visit our Facebook page to see daily uabounds about Hannah & adorable pictures of her!!! Hope for Hannah! 

thank you all for our continued prayer, support, & well wishes for Hannah!!!! We are all spreading leukodystrophy awareness.....one person at time!!!


--Elise

HOPE FOR HANNAH
TEAM HANNAH BEAR

06/25/2013
by Friends & Family of Vicki, Justin, Faith, & Sam
Sorry its been so long since the last update.

Last week Hannah, spent the majority of her week at CHOP in order for her to have a feeding tube inserted, Vicki, Justin, & Hannah's doctors had decided that a G-Tube (feeding tube directly placed into Hannh's stomach) was the best decision for Hannah. After a minor surgery, in which Hannah did awesome, Vicki & Justin were able to bring their little girl home for one night before their big trip to Pittsburgh.

Today Hannah begins her testing in Pittsburgh before meeting with Doctor Escolar, who is an expert in Krabbe.

Please continue to keep them in your thoughts & prayers. If you haven't 'Liked' them on facebook, please like Hope for Hannah, to continue spreading awareness.

--Elise

06/17/2013
by Friends & Family of Vicki, Justin, Faith, & Sam

It is with a heavy heart & tears in my eyes that I write this update. Today Vicki & Justin took Hannah in to get the results of her blood work about which form of leukodystrophy she has, & the results are as the doctors originally expected. Hannah has Krabbe disease. At this point that is the only information that we have, but an update will be posted when more information is available.

At this time all I can ask of each of you is to please continue to keep Hannah, Vicki, Justin, Faith, & Samantha in your thoughts & prayers. They are on a heart breaking journey that no family should ever have to experience.

--Elise



06/17/2013
by Friends & Family of Vicki, Justin, Faith, & Sam
We would like to thank every who supported Hannah & Leukodystrophy awareness on Saturday by wearing their navy blue. It was remarkable to see all of the photos being uploaded to Facebook, Instagram & shared with Vicki, Justin & the girls. The outpour of love & suppot is amazing. As difficult as all of this is on their family, knowing that they aren't alone is just a wonderful gift that you all have given to them.

Today we hope to get the result from the testing done at CHOP to find out which form of Leukodystrophy Hannah has, please continue to keep them in your thoughts & prayers. We will be posting another update as soon as we have more information.

Thank you all for your donations, love, support, & prayers.

--Elise




06/15/2013
by Friends & Family of Vicki, Justin, Faith, & Sam
Today is Hannah's 5 month birthday & today people across the world are wearing Navy Blue to wish Hannah a Happy Birthday & show their support for her whole family. If you haven't heard yet, there is now a facebook page, so please come by & "like" the page. Again, thank you all for your donations & support, please help us spread awareness of leukodystrophy.

--Elise

06/12/2013
by Friends & Family of Vicki, Justin, Faith, & Sam
On behalf of Justin, Vicki, & the girls, we would like to say thank you, to each & every one of you who have donated, prayed, & continue to keep Hannah & their family in your hearts.

We have reached our second goal of $2500, in less than 48 hours!!! This is an incedible thing that we are able to do to help support them in thier time of need. Please continue to spread the word & make people aware of this terrible disease!!!

--Elise

06/10/2013
by Friends & Family of Vicki, Justin, Faith, & Sam
In just under two & a half hours we have raised an AMAZING $794, just $206 away from out original goal of $1000, so I am raising our goal to $2500.

Amazing everybody thank you so much. When I spoke to Vicki earlier she told me that so far Hannah was having a good day, she was even taking her bottles like a CHAMP!! Lots of continous prayers for Hannah, her parents & her sisters!!!

-Elise

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