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 babies
That 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.
Your words are so inspiring, but I am still crying. Bertrand was born 12/09/07, a week before Greyson. It’s not fair that Grey isn’t here anymore. It’s not fair that Hannah and Bertrand are fighting for their lives, or that any child has to fight for their life. At least Grey has a legacy–that no other child in TX will die from Krabbes. It’s a powerful one. Even though I don’t live in TX, please tell Nicole thank you from me. And, give both Hannah AND Hope a hug from me. 🙂
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My cousin died of Cystic Fibrosis 24 years ago. My aunt campaigned for 15 years to have CF added to the newborn screening tests. It brought her such comfort to know that Gabe would have been tested. Good for Nicole.
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I had no idea that TX was so lacking in newborn screening! How scary that my kids could have been sick and we wouldn’ know until it was too late. I am so glad for Graysons legacy.
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How sad that they’ve lost their son and what a wonderful future of hope to have Greyson’s law passed. We all must do more to protect our children. It’s strong moms like you and Greyson’s who are leading the way and we all need to follow your examples.
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Nicole’s fight to change laws and save children is so wonderful!
This story made me cry – it was just so moving!
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Hey There,
I contacted the company we talked about the other day. I e-mailed the head of Alliance Management (in charge of new business deals) the Senior VP of Research and most importantly, their head of communications. I told them that the good press they would get (local company helps hometown girl) would be wonderful. I heard back from the business guy and he is all for it, but waiting on the VP for his input. I am pushing it hard, and would be able to keep in close contact with the scientists who will be doing the actual work. It’s not a done deal yet, but I am working it!!!
Wendy
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Have been thinking about you and Hannah – I am grateful to know you have bulit such an amazing support system online – I am truly amazed at the changes moms are bringing purely by fighting for their children.
Sending love.