The heartbreaking story of a baby from Calgary called Evan Pogubila who died from a rare immunodeficiency disease, captivated the whole of 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," 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.
Last June 26th, the wide-eyed heart breaker 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.
Read the full article here
No comments:
Post a Comment