Our Story
OWEN VINCENT SHULER
March 7, 2008 - August 16, 2008
Owen Vincent Shuler was born on March 7, 2008 in Suffern, NY first child to Dorothy and Jon Shuler. On May 5, 2008 at just 8 weeks old Owen was diagnosed with Spinal Muscular Atrophy Type I (also known as Werdnig-Hoffman Disease). There are 4 types of SMA, with Type 1 being the most severe form. SMA is a rare genetically inherited neuromuscular disease characterized by gradual muscle weakness due to loss of motor neurons of the brainstem and spinal cord. Babies with SMA Type 1 have difficulty breathing and swallowing. The lifespan of those affected by SMA Type 1 is only 1-2 years. For more information about SMA and the characteristics of the disease please visit: http://www.fightsma.org/.
On August 16, 2008, at just 5 months old, Owen passed away peacefully after battling for 34 days in the Pediatric ICU at the Columbia Presbyterian Children's Hospital of New York.
Owen will always be the beloved son of Jon and Dorothy Shuler. Owen is also survived by an extremely loving family; great-grandparents, Jerome and Fran S. and Jayne M.; Grandparents, Vincent (Papa) and Dorothy (Nana) G. and Jeffrey (Grandpa) and Lucille (Nany) S.; Aunts and Uncles, Brian G., Katie C., Kerri and John A., Maureen G., Allyson and Michael D.; Cousins Gillian and Patrice A. and Teagan D.
Owen was a sweet, happy adorable baby. His eyes were so expressive, when he smiled his whole face lit up. He loved Franklin, and Maggie & the Ferocious Beast. He was scared of Monsters Inc., but loved Finding Nemo, Toy Story and Cars. Owens's favorite puppet was Grover who was always by his side, and he loved his musical puppy as well.
Owen was only here for a short time, but his smile was infectious and he touched so many people. He will forever be with us in our hearts and will be our little angel watching over us. Please continue to think of Owen and spread awareness about Spinal Muscular Atrophy, hopefully within a few years no other family will have to endure the devastation of losing a baby to this horrible disease.
If you haven't done so already please visit and sign www.PetitionToCureSMA.com to continue to FIGHT FOR OWEN, and all the other families affected by this heartbreaking disease.
With Love,
Dorothy and Jon Shuler
We are forever grateful for the generosity shown to our family and will make it our life’s mission to find funding to Cure Spinal Muscular Atrophy. In Owen’s honor and memory we have been forwarding donations to the Columbia University SMA Clinic to continue to FIGHT FOR OWEN.
Donations are being sent to: The Pediatric SMA Center, Harkness Pavilion 519, 180 Fort Washington Ave, New York, NY 10032.
