March 4, 2013

After son dies, Maine couple fights for a cure

Their foundation, Hearts for Ezra, works to raise awareness of spinal muscular atrophy.

By CRAIG CROSBY Kennebec Journal

HALLOWELL – Ethan and Emily Bessey never got to see Ezra's first step or feel their son's arms wrap tightly around their necks. Ezra never got a chance to climb up into his mother's lap. He never ran into his father's arms when he arrived home from work.

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Ezra Bessey of Hallowell died Feb. 5 at 8 months old from spinal muscular atrophy. The foundation will hold its first event March 10 in Farmingdale.

Family photo

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Ethan and Emily Bessey, with their daughter, Daisy, discuss the brief life of their son, Ezra, in the boy’s bedroom at their Hallowell home. Emily’s online journal was read by thousands.

Andy Molloy/Kennebec Journal

HEARTS FOR EZRA FUNDRAISER

March 10 at Hall-Dale High School, 97 Maple St., Farmingdale. Doors open at noon. Show begins at 1 p.m.

Free admission.

Face painting, and a silent auction.

Two-hour show includes a magician, a musician and former Ringling Bros. clown Ted Lawrence.

  To donate items for the silent auction, contact Kieran Kammerer at HallowellWoodWorks@gmail.com.

  For more information, or to donate to Hearts for Ezra, visit online at heartsforezra.com or mail a check made out to Hearts for Ezra to: Kennebec Savings Bank, Attn. Deb Coulombe, 150 State St., P.O. Box 50, Augusta, ME 04332.

But what Ezra had, he gave, and what he had were his eyes and his smile, his family said. And when he locked on to his parents, he momentarily erased the grief his parents knew waited just around the corner.

"Sweet Ezra passed away tonight at 9:05 p.m. in my arms. He was surrounded by love and songs," Emily Bessey wrote in her blog moments after her 8-month-old son died Feb. 5 at the Besseys' home in Hallowell. "Just before he passed he focused right at me ... then focused on Ethan ... and then peacefully closed his eyes."

It was, at the time, the final entry in an online journal that Emily had started months earlier, even before learning of Ezra's fatal illness. Along the way, it would be read by thousands of people from across the world who have never met Ezra or his family, but who came to care for them through Emily's words.

"Places in which I don't even necessarily feel like we have a contact have seen it," Emily said. "Part of the way we keep people alive is by telling their story."

Emily started the online blog, ezradavid.wordpress.com, in October 2012 after Ezra's four-month checkup revealed a problem. Ezra's older sister, 3-year-old Daisy, was able to do a lot more for herself by the time she was 4 months old.

"I'd been having some concerns about his development -- namely his lack of head control, no movement towards rolling and disinterest in 'standing' when held up," Emily wrote. "I thought maybe Ezra was just moving along at his own pace."

But Ezra's pediatrician, Dr. Kieran Kammerer, sensed there was something wrong. He referred Ezra to a neurologist, who suggested disorders such as muscular dystrophy. The couple tried not to panic as they waited more than a week for test results. In the back of their minds, they began making plans for life with a child who is disabled. Ethan wondered whether his son would have a girlfriend or play sports.

The Besseys, with Ezra, drove to Portland on Oct. 13 to meet with the neurologist about Ezra's test results, which arrived two weeks ahead of schedule. The doctor said Ezra had tested positive for spinal muscular atrophy.

The Besseys used their phone to search for information on the disease online. Their son was dying -- quickly -- and there was nothing anybody could do to help. The couple's only comfort was the doctor's reassurance that Ezra probably would not suffer.

"He's smiling at us and we're getting this death sentence," Ethan said. "For two days we watched every single breath."

"He is smiley and talkative and I simply cannot picture our family without him," Emily wrote in her blog the night of the diagnosis. "I can't imagine our Daisy without her little partner in crime. Anyone who knows Daisy, knows how much she LOVES babies ... and her brother is at the top of her list. As our world seems to be crumbling around us, Ethan and I know we have to somehow hold it together for her. She needs us to be strong and find a way to carry on."

'NO INSTRUCTION MANUALS'

The blog, which Emily had started to keep family and friends updated on Ezra's progress, soon became an ally in her quest to learn more about the disease and connect with others who have lived with it.

(Continued on page 2)

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