Thursday, April 17, 2014

What goes around comes around in our special needs community

Five years ago, a friend I met through this blog let me know that Duke University had stem cell clinical trials for kids with cerebral palsy. She had a child with special needs, too, and she'd gone to an informational meeting at John Hopkins about stem cell therapy for children with disabilities. She thought I should know about what was happening at Duke. "I picked up an extra packet at the conference for you... It has a lot of info that may interest you!" she wrote.

I got in touch with the Duke University doctor in charge of the stem cell program, Joanne Kurtzberg, M.D. A few months later, Max got his stem cell infusion.

If it weren't for that reader, and her drive to look into anything and everything possible to help her son, I might have never known about the stem cell work being done at Duke.

That friend is Kate Leong of Chasing Rainbows. This week, it's a year since her son Gavin passed away—a year in which he's had an impact on countless lives, thanks to the do-good initiatives, organ donation awareness and charity initiatives Kate's launched in his honor, most recently Gavin's Playground Project. This week, I got an email from a mom to a 21-month-old girl with cerebral palsy. It read:

I just wanted to let you know that my daughter got a stem cell infusion at Duke University. I learned about it from your blog and wanted to thank you....  

This is the circle of help and hope in our community. We inform, encourage and inspire each other. We know what it is like to be that mom of that child. While we don't always know exactly who we will help with our blog post or Facebook update or donation, we put it out there into the universe, powered by caring and compassion.

Sometimes, it comes back to you in the most amazing way.

I do not think it's a coincidence that five years ago this spring, Kate told me about the stem cell infusion we eventually got for Max. And this spring, another child received one because Max did.

What goes around comes around.

Image of hands: Shutterstock


  1. Another neat circle of moms thing: I've been re-posting the Upsee giveaway, in hopes of winning. Another family who loves our girl, even though they haven't met her, and who used to work with me in fundraising for the NC Children's Hospital back before we had kids and before mine was a patient there sent me a message asking if we'd be open to letting them buy an Upsee for Zoe.

    Coincidence? I think not.

    (And now if I win, I get to keep the circle going, because I know an in-over-her-head mama in my area who isn't even at the place to keep tabs on things like the Upsee and whose daughter would benefit in a big way from it.)

    I love our community.

  2. And isn't it wonderful when "what goes around comes around" is something positive???

  3. It works like karma.

  4. I love you, Ellen. You helped me so much when Gavin was alive. As I said in my eulogy, I stood on a lot of shoulders to get him as far as he did. We all need each other...special needs or not. Thank you for the flattering mention. Xoxo

  5. Sweet! It's so heartwarming to know that there are so many people who want to help others. In this day and age it may not always seem so, but I do believe that there are more good people in the world than bad! Thanks Ellen!


Thanks for sharing!

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