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Sunday, May 27, 2012

Meet the Band (of Brothers and Sisters)

Meet Kenan’s peers, the ones I ask special prayers for, the ones traveling the road of Krabbe Leukodystrophy along side him. With the exception of Marshall, Trevor and Anaya, they were diagnosed around the same time and are close in age, although each is experiencing the disease at a different rate. None were identified through newborn screening and none were eligible for stem cell transplant. They are an international crew, each with a story of sorrow, hope and inspiration. Social media has aloud us to come together, sharing our children’s stories, experiences and resources. Likewise, when one of us is hurting or suffering, we all are too.

Clockwise, back to front:

Lauren on Guitar - Canada
Ginevra making Devil Fingers - Italy
Trevor on Bells - California (one of fraternal twins. His brother, Tyler, is unaffected.)
Marshall on Recorder and Vocals- Oregon (diagnosed at 17-months with late infantile, a month after his little brother     Michael was born. Through Marshall’s diagnosis, Michael was identified with Krabbe and received a stem cell transplant early on. He is doing well. Another strong case for the importance of Expanded Newborn Screening.)
Gabriel on Keyboards– Mexico
Kenan on Vocals - Illinois
Jo-Jo on Guitar- Texas
Anaya- Canada: Represented by the rainbow and Gabriel's t-shirt. We lost her this past November 2011.

Our inspiration for The North Costenitos: Gabriel’s’ mother, Mayte Jimenez, an exceptional woman up against numerous odds, living in an economically strained, Mexican community with few resources, along side a medical establishment with limited-to-no knowledge at best, that has “given up” on Gabriel because his situation is deemed “hopeless”. There is no hospice nurse that comes to visit once a week, no Walgreen’s Infusion Service shipping monthly medical equipment and supplies, no medical insurance to help cover expenses, and no one to turn to when Gabriel suffers through his 200+ seizure episodes. Yet, it the midst of this, Mayte never stops having fun with her son. We all watched as she posted pictures of Gabriel in a sombrero, with sunglasses, lying in the tub, a fruity umbrella drink at his side, or when she posed him with a blow up saxophone and keyboards. Her desire to role-play was infectious. One winter afternoon, we all joined in, rummaging through toys, looking for our instrument of choice. 

Play and the exchange that comes from it is a crucial part of a child’s life and expression. Our Krabbe Kids have very little ability to support or move their bodies, they can’t talk or eat, some can’t see or hear, others struggle to breath; because of this, play is a word that is forever altered. Through Mayte and Gabriel, we had the opportunity to connect our children through a virtual, international, play date. It made for a very special afternoon for all of us. Thank you to Lauren’s dad, Stephen Loughheed, for his Photoshop skills and Tammy Wilson for working on the t-shirts (coming soon).

Below is a list of blogs, fundraising pages, and sites for the kids. A little help can go a long way:


Ginevra/Veronica Arnieri

Lauren/Amanda Zarifah

Trevor/Nicole Goreham Aldrian

Marshall/Tammy Wilson,

Anaya/Camara Cassin 

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