After receiving this devastating diagnosis, Emily and Ethan did their best to gather as much information as they could about this disease they had never heard of. They discovered Cure SMA (www.curesma.org) which provides amazing support for newly diagnosed families. They made the decision that the quality of the days they had with Ezra were more important than the quantity and worked hard to surround both Ezra and Daisy with love.  Over the next few months, they noticed that Ezra's breathing became more and more labored and his ability to move his arms and legs began to deteriorate. They had a feeding tube placed in his belly because most SMA babies eventually lose their ability to swallow. Through all of this, Ezra remained a bright eyed, alert, happy boy. Right up until the day he died on February 5, 2013, Ezra connected with people with his sparkling eyes and adorable smile. Ezra David Bessey was 8 months and 6 days old when he died. His parents were heart broken and filled with the resolve to bring awareness to this disease and help find a desperately needed cure.

In 2009, Emily and Ethan gave birth to a healthy, beautiful little girl named Daisy. They were excited to add another child to their family, and in 2012 they gave birth to Ezra David. Emily had a very healthy pregnancy and Ezra delivered right on his due date. He was a happy, smiley little guy, but before his 4 month well child visit, Emily noticed that Ezra was not meeting some developmental milestones- like holding up his head, applying pressure through his feet, or kicking his legs. Their pediatrician agreed something might be going on and referred the family to a pediatric neurologist.

 

A simple blood test was done and it was determined that Ezra was missing a very important gene- the Survival Motor Neuron Gene resulting in the diagnosis of Spinal Muscular Atrophy. Because of how young he was and the symptoms he was presenting with, the doctors determined he was considered a Type I and with that came the worst prognosis. Most babies with Type I do not live to see their 2nd birthdays.

 

The Hearts for Ezra Foundation was established with two primary goals; to help fund research in the hopes of finding a cure and to educate others about Spinal Muscular Atrophy.  We hope to help both individuals and care providers to better understand the illness, to know the support services that are available to them, and to have access to genetic testing that can identify you as a carrier before even conceiving a child. The science is there... Get tested. Find out if you are a carrier. 

 

Emily blogged about their experience at: ezradavid.wordpress.com

The Hearts For Ezra Foundation is a 501 (c)(3) that was started in 2013 with the mission of raising awareness and fighting for a cure for Spinal Muscular Atrophy. HFE started as the idea of Dr. Kieran Kammerer, Ezra’s pediatrician, as a way to honor Ezra and is run by his parents Emily and Ethan Bessey. Our hope is that with awareness comes funding and with funding comes a cure.