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.

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.

“I felt this is a private family crisis, but we need the help of the greater community,” Emily said.

The blog also offered a release for Emily as the disease ravaged her helpless son.

“It’s almost like she’s writing for a friend, but there are thousands of people reading it,” Ethan said.

The blog entries detailed the couple’s search for drug trials or meeting with specialists, including a session with doctors at Children’s Hospital in Boston. Emily documented, in excruciating detail, as efforts to improve Ezra’s health failed and the focus turned to making his life — however long it might last — as full and comfortable as possible.

“The reality is that I know no amount of talking, or reading will change this for Ezra or our family,” Emily wrote Nov. 17. “I can talk ’till I’m blue in the face, and I can read a hundred books about how to cope with grieving, but it still doesn’t alter the fact that I am going to have to someday figure out how to live without my little boy.

“There are no instruction manuals of how to recover from this, no directions for what to do. I feel lost.”

DEADLY DISEASE

Spinal muscular atrophy refers to a group of inherited diseases of the motor nerves that cause weakness and atrophy, or wasting, in muscles that control breathing, crawling, walking, head and neck control, and swallowing, according to Families of SMA.

The disease is broken into four types. Type I, which Ezra had, is always fatal. Type IV, which occurs in adults, causes muscle weakness but is typically not fatal.

“Everyone that’s affected is missing one certain gene,” said Kenneth Hobby, president of Families of SMA. “People can have certain numbers of backup genes. The more they have, the less severe it is.”

Hobby said it is those backup genes that gives researchers such hope for an effective treatment. There are currently 15 therapies in development, three of which are in clinical trials.

“If we can design drugs and therapies to turn that switch up, we’re going to take this disease from being very severe to less severe,” Hobby said. “We are so close to getting a therapy, a treatment and cure for this disease.”

Ezra didn’t qualify for any of the experimental trials.

“It makes sense to me now,” Emily said. “You can’t have a control group because they die.”

Hobby said about 1 of 40 people, or 8 million Americans, is a carrier without showing symptoms. If both parents are carriers, the child has a 1 in 4 chance of being born with SMA. Neither Emily nor Ethan knew they were carriers.

“It’s not rare,” Hobby said. “It’s out there.”

RAISING AWARENESS

He said the disease has garnered little attention because it is an infant disease and kills quickly. In contrast to the circumstances of other fatal diseases, there are no celebrities, or even adults, who live long enough to raise awareness. Parents who have lost an infant are rarely able to work through their suffering to become advocates, Hobby said.

“It’s a brutal disease,” he said. “That’s a tough battle to keep fighting after you’ve lost the child. You want to close the doors. You want to shut it out.”

However, Emily and Ethan Bessey are committed to be being the exception. Their foundation, Hearts for Ezra, will work closely with Families of SMA to help raise awareness for SMA and fight for a cure.

“Our main focus will be on raising awareness with the hope that if SMA becomes as well known as muscular dystrophy and cystic fibrosis, that we will get closer to finding a cure,” Ethan said. “I can see our foundation becoming a source for doctors, midwives and fertility clinics in Maine and New England to learn about SMA through Ezra’s story.”

The foundation is named, in part, after Emily’s hobby of collecting heart-shaped rocks. She now keeps boxes of the rocks that arrived for Ezra from across the globe from people who read Emily’s blog. Sending the rocks gave an outlet for people desperate to offer help, Ethan said.

For the Besseys, each rock is evidence of the overwhelming support they’ve received. Hearts for Ezra is a way for the family to pass along that support to others.

“Hopefully, eventually, children aren’t dying from this disease,” Emily said. “That’s the ultimate goal.”

The foundation’s first event is scheduled for noon March 10 at Hall-Dale High School in Farmingdale.

Kammerer, Ezra’s pediatrician, began planning the event some time ago, even before Ezra died, to raise awareness about spinal muscular atrophy. By reaching out through social networking sites and by calling in a few favors, Kammerer secured three performers: a magician, a musician and a clown who worked for Ringling Bros. circus. The show begins at 1 p.m.

“Those are the main acts,” Kammerer said. “That will take up the bulk of those two hours.”

There also will be something for adults, even those without children, Kammerer said, including a silent auction for items donated by individuals and businesses across the region.

“It’s going to be a well-done event,” Ethan said. “We just need a lot of people there.”

Kammerer said he was spurred to help the Besseys after meeting Ezra and his parents.

“They’re an incredibly nice family,” he said. “They’re the type of people who would mobilize the forces and get things done to help someone else. I was struck by that.”

The doctor, who visited Ezra at home so the weakened boy didn’t have to be around sick children in Kammerer’s office, was with the Besseys the night Ezra died. Unable to help Ezra, Kammerer retrieved a memory kit from MaineGeneral Medical Center so that the Besseys could take hand and foot prints of their son before he died.

“It was just so sweet, even in that moment, he was thinking, ‘What can I do?’ ” Emily said.

Kammerer admits that Ezra stood out among his patients.

“There was something about his eyes and his smile,” he said. “He kind of drew you in. … He was very easy to love, and the family is very easy to love.”

Craig Crosby can be contacted at 621-5642 or at:

ccrosby@centralmaine.com