Tot raised awareness of need for donors

Valerie Fortney, Calgary Herald

Published: Saturday, December 29, 2007

The heartbreaking story of little Evan Pogubila, a Calgary baby who died from a rare immunodeficiency disease, captivated Calgary this year.

While the Pogubila family is still coping with grief, Evan has left behind a legacy his family is carrying forward, increasing awareness of the need for blood and bone marrow donors to help save lives.

It’s just before bedtime, but little Jordan Pogubila shows no signs of slowing down for the night. Wearing a pink sleeper covered in butterflies, her strawberry blond hair cut into an adorable bob, she captivates all around her as she dances to the pop song playing on her parents’ stereo.

“She’s the wild one, Evan was the calm and patient one,” says her mom Melanie as she smiles at her exuberant toddler.

If life had gone the way it should, the 19-month-old’s twin brother, Evan, would be right beside her, bopping along to the music in that amusing toddler way.

Instead, a box sitting on the living room side table, his photograph on the outside and his cremains within, look down upon this happy family scene.

On June 26, 2007, the wide-eyed heartbreaker of a baby died, after a courageous battle against severe combined immunodeficiency disease, also known as SCIDs.

Evan was the only known child in Western Canada with SCIDs, a condition first brought to the public eye in 1976 in a TV movie called The Boy in the Plastic Bubble.

Like David Vetter, the real-life boy who inspired the film, Evan spent most of his short life living in solitude from the rest of the world.

Caused by a genetic defect, the condition is the most rare, and deadliest, of the primary immunodeficiencies. Any contact with others, including his twin Jordan, could compromise what little immune system Evan had.

Over the past year, Calgarians have been captivated by the story of Evan and his family as they fought to save his young life. Through stories in the

news media and http://www.caring

bridge.org, a website that helps those to connect with others during times of critical illness, treatment and recovery, the family shared their emotional roller coaster ride with the public.

(For Evan’s story, go to http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteNa me=evanpogubila)

We were touched by the story of the baby who could never feel his mother’s lips pressed against his bare cheek, or his twin sister’s cuddles; we rejoiced with the family when in February, a perfect bone marrow match was made for Evan — a one in more than three million happenstance; and we mourned in June when, after being plagued post-transplant with infections, graft-versus-host disease and cancer, the boy whose name means “little warrior” finally gave up the fight.

Today, the Pogubilas are still willing to share their journey with others, despite struggling with a very private grief. They do it, they say, for two very good reasons.

First, they welcome the opportunity to express their gratitude to all who supported them, from family and close friends to health care providers, as well as the community at large.

“The outpouring of love and support from everyone has been amazing and humbling,” says dad Frank, a 37-year-old sales manager for a service company in the oilpatch. “It has restored my faith in community.”

Their other reason is to increase public awareness of the need to donate blood products and sign up as a bone marrow donor.

“We never knew how important it was until our baby got sick,” says Frank as he spins Jordan in the air. “The system gave us so much, and so much to Evan. This is our way of giving back.”

Indeed, when the Pogubilas first learned in the summer of 2005 that Melanie was pregnant with twins, there was no reason to think they might be about to face the biggest challenge of their lives.

“There was no indication anything was wrong,” says Melanie, who delivered her children by

C-section on May 8, 2006.

They were born full term, and apparently in perfect health. “It was everything we could have hoped for.”

The first five months were, says the 35-year-old mom, exhausting but fun. Then, she noticed her boy had a diminished appetite, wasn’t gaining weight and started to exhibit fast-paced breathing.

“Having Jordan to compare to, it was even more obvious,” says Melanie. She and Frank whisked Evan to the hospital, where they found he was suffering from a type of pneumonia common to those with compromised immune systems.

After her son was in the hospital for a couple of weeks, “we got the bomb dropped,” says Melanie.

But there was a silver lining in the dark cloud. Bone marrow transplants on SCIDs patient are 90 per cent successful, they were told.

“We were so scared, but we also had a tremendous amount of hope,” says Melanie. “There was a long road ahead, but we were prepared to take it.”

After successful transplant surgery in March at Toronto’s Hospital for Sick Children, his parents were filled with optimism. Their hope was shared by medical staff, who by early June were advising Melanie on what equipment and supplies she’d need at her temporary Toronto home when Evan would graduate to day patient.

“I had the moment pictured in my mind, just being able to walk out of the hospital with Evan in my arms,” says Melanie. “With no gloves, no mask, no gown.”

Today, the young couple finds some comfort in the memories of their beautiful baby boy.

“He flirted with the nurses, he’d even smile when they poked and prodded him,” says Melanie. “He was so good at reading eyes, since everyone he met was wearing a surgical mask.

“When Jordan would come up to the window at the hospital, they’d both go crazy, banging on the glass.”

“He was an inspiring little person, going through what he did,” says Frank, who smiles at the memory of Evan’s infectious laugh and way of clapping with his arms held out straight as arrows.

Another source of solace has been how Evan’s story has increased awareness of the need for donors of blood products and bone marrow. After one Herald article ran, says Melanie, the Canadian Blood Services website (www.blood.ca) received 90 new bone marrow donor applicants.

“It was so out of the ordinary, they at first thought it was a computer glitch,” she says.

To keep this need in the spotlight, the Pogubilas are planning to lead a donation drive in February in conjunction with Canadian Blood Services.

And while helping to increase awareness is their public way of honouring their son’s memory, they have found a private one as well.

“Evan was infatuated with butterflies,” says Melanie, who together with her sister Janeil had a butterfly tattooed onto her right wrist; butterfly ornaments also adorn the Pogubila’s Christmas tree.

When Evan died, Melanie’s sister, who was with her in Toronto, called home to check on her young son. Her mother-in-law told her they were just in the backyard, playing with a large butterfly.

“I like to think that was Nathan’s spirit,” says Melanie.

And then there’s that spirited twin, dancing around the room in her butterfly sleeper.

“She keeps us busy,” says Melanie with a sad smile. “And she also keeps Evan’s legacy alive.”

vfortney@theherald.canwest.com

© The Calgary Herald 2007
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