Garrett the Grand – Batten Fighter

Hello Runners and Patient Partners,

My name is Nancy Coyne and my son is Garrett Coyne, age 4.  Garrett is paired with Zeb Jones who is running the Boston Marathon!  So who do I talk about first, Garrett or Zeb?!

Well Garrett, he is a wonderful, happy, curious, most lovable little boy with a terrible, rare, fatal, genetic disease, NCL or Batten Disease – infantile.  It still makes me cry every time I type that.  He is my first child and what a joy!  Beautiful pregnancy, rough delivery, challenging infancy then just pure happiness.  He was developing normally expect for a small speech delay and never slept through the night.  He was growing and meeting all milestones until around age 3 and a half when we thought he needed glasses.  He would hold books, trains, computers close to his face.  We were reassured he was being a kid and “his eyes were fine”.  Progressively his vision got worse and he was no longer picking airplanes out of the sky and he was walking into walls at night.  We went to the eye doctor again, then the opthamologist and then to the special genetic eye doctor at Will’s Eye in Philadelphia.  My husband and I were thinking the worse… our son will be blind.  Little did we know that would have been the best case scenario.  Garrett went through an MRI, ERG and genetic bloodwork.  Weeks went by and we finally got our answer… Neuronal Ceroid Lipofuscinosis – infantile (Batten Disease), say what?!

It is a rare, fatal, genetic disorder.  My beautiful, loving, happy little boy will continue to lose his vision, he will have seizure activity, his motor skills will disappear and his entire body, mentally, physically will deteriorate until his is bed bound and taken from us far too soon.  Everything is so variable and unpredictable but the ending is always the same.  There is no treatment or no cure.

But there is hope…. YOU!  Thank you to our awesome runner Zeb and everyone involved in the running for rare disease community.  We hope to raise awareness and encourage researchers to find interest and search for a cure or even just a treatment to help.  Getting back to Zeb… he is a great, ambitious guy who gives us hope to know that there are people and strangers out there that care and can easily become friends.

I am sending out encouragement and strength to the team.  It really means lot, you can do it, we are in it together!DSC_1540

See you in Boston,

Love,

the Coyne Family, Nancy, Joe, Garrett and Palmer

p.s. If you are interested in Garrett and his journey go to www.battenfighter.com or look us up on Facebook, Garrett the Grand – Batten Fighter (we started a non-profit).

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5 comments on “Garrett the Grand – Batten Fighter
  1. Marissa Poole says:

    Sincere thanks Nancy for sharing your story and being a part of this team. What a beautful smile that Garrett has! Your words inspire us to continue to run and raise awareness to do more for the many rare diseases such as NCL. I will be running the Providence marathon but be in Boston cheering on the team so look forward to meeting you all there.

  2. Stephanie Dubay says:

    Dear Nancy, thank you for sharing your story and I look forward to meeting you and Garret in Boston. Your story and Garret’s journey inspires me as part of this running team to create connections in the medical, patient and family communities – leading us ultimately to advancing treatments, cures and hope.

    • Anne Burtenshaw says:

      Nancy, thank you for sharing. Garrett is a beautiful little boy, this breaks my heart but also makes me very aware of how important the mission is of this amazing group. Our family looks forward to meeting you in Boston.xo

  3. Peggy DiCapua says:

    Nancy,thank you so much for sharing your story. I am glad to have been able to speak with you as I share in the Batten journey, even 11 years after I lost my son Christopher to Batten Disease. I think it’s wonderful that you have been paired with Zeb and I am grateful to him and the rest of the rare marathon team for their dedication to helping raise awareness and interest in rare disease research. Don’t lose hope!

  4. phil says:

    Nancy, thank you so much for sharing Garrett’s story. I cant wait to meet him in person tomorrow.

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Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.