How a little bear named Hope made history

Over the years, I have met some wonderful people online who have become an some of my closest friends. Being able to meet them in person, even just once, has helped solidify friendships that have lasted almost a decade.

Throughout this journey with Hannah, I have also met some wonderful people. Some who have become partners in our fight, some who have offered an ear and a hug, and some whom I admire not only their dedication to their own fights for their children but the willingness they are to open their hearts to me.

One such woman, Nicole, I was “introduced” online to back in December. It was just a few weeks before her little boy, Greyson, passed away from Krabbes disease, another lysosomal storage disease (like Gaucher’s). What is even more heartbreaking than the fact this gorgeous little boy wasn’t even given a chance to reach his first birthday was the fact that his death SHOULD have been prevented.

Krabbes disease is one of those devastating disease that, if tested during the newborn screening process and found early, can be treated. TREATED! There is a treatment for this disease! But here in Texas, Krabbes disease was not one of the 29 diseases they test for here.

Greyson, a little boy who will save thousands of Texas babiesThat is very close to changing. Nicole and her family have worked incredibly hard these past four months championing a change in Texas law for the newborn screening process to include not only Krabbes disease but 40+ other diseases rather than the 20 or so they used to test for. It passed the senate, and today, it passed the house committtee!

WHAT does this have to do with this cute little bear??

Today, I had the priviledge of meeting with Nicole, Greyson’s mom, today at our local mall. We have been in support of each other’s journeys and fights since right before Grey passed away. Ethan and Abigail had playdates, so it was just me and Hannah. We met at Build-A-Bear, a favorite place of Nicole’s.

She asked if it would be okay to for her to make a bear for Hannah. Of course! So, she took Hannah, and the two of them, along with Nicole’s good friend, looked around the store for the perfect bear. They chose this really adorable collectible bear with a collectible pin.

Nicole named the bear “Hope,” the bear she made for Hannah in honor and memory of her son Greyson. She kept the collectible pin, as I told her that from now on, she and Hannah are now connected forever.

And how did this little bear named “Hope” make history today? Greyson’s law was one step closer to become a reality today, this afternoon after the House committee approved it. Greyson’s legacy will not only live on in saving the lives of countless Texas children once this bill is written into law, but Greyson’s legacy also lives on in our fight to save Hannah’s life.

It is almost as if little Greyson, thanks to his mom, is fighting for Hannah too. And this little bear named “Hope” is our reminder that Hannah has little Greyson watching over her.

You can read more about our fight for Hannah’s life at (my nickname for her!) or join our Hope for Our Hannah Facebook cause.

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