Alexander Alaga (Alex) Melkic

June 2, 1992-August 23, 2005

Sharp-shooter, plane aficionado, science buff. Born June 2, 1992, in Guelph, Ont. Died Aug. 23 in Toronto of complications from Epidermolysis Bullosa, aged 13.

It’s hard to celebrate the life of a 13-year-old boy. Alex never had a chance to become the doctor that he wanted to be. He was too busy looking forward to Grade 8 and trips up to Kincardine, Ont., to ever think that he might vanish from the planet so soon.

Yet Alex rose above the dire predictions that plagued his life. In the face of a painful and debilitating disorder, he found joy. Alex’s laughter was so authentic, so uplifting, that strangers would often stop on the street and smile when they heard it. He liked to entertain, sometimes adopting a silly voice or changing the wording of TV commercials to get a chuckle out of his dad Al and 10-year-old sister Maddy.

Alex had struggled with pain since coming into the world with no skin on his lower left leg and large blisters enveloping his fingers. The diagnosis: Epidermolysis Bullosa, or EB, a rare genetic disorder in which layers of the skin don’t hold together, instead separating into blisters. Milder forms cause pain. But Alex had recessive dystrophic EB, the most severe and cruel form of EB, other than those forms which take away life in infancy.

Thus began a war against an enemy his family could never defeat. There were the three hours of painful dressing changes at night, repeated hand surgeries until Alex’s fingers fused and became useless. The trips to Toronto’s Hospital for Sick Children numbered in the hundreds, thanks to endless blood transfusions, physiotherapy, counseling, and emergencies. Worse, perhaps, were the psychological battles — learning to live with the stares of strangers, keeping Alex’s spirits up in the face of all his pain and helping him come to terms with physical limitations that eventually forced him to move around in a wheelchair.

But through this all, a little boy grew up to at least sit on the cusp of adulthood. Alex loved his X-box computer-game console, toy guns and cherished airplane collection. He adored movies and using his computer to whisk around in the disability-free world of cyberspace. Yet he was also thoughtful beyond his years. He would debate about the influence of Wal-Mart and the need for fair global trade. He talked about his place in school, preferring the company of smart “silly girls” to uber-cool cliques. He liked to shop without help, telling his dad: “You can’t be shy if you’re handicapped, you just won’t make it.” A fan of military history and Canada’s peacekeepers, he even took Remembrance Day more seriously than some war veterans.

Then again, Alex was a veteran — of a different kind of war. When he went to the hospital for the last time on Aug. 23, he was suffering from another of the bacterial infections that sometimes plagued him because of his open wounds. He asked his mother Jocelyn for a drink of water, sipped it, and quietly said: “I don’t feel so well.” Those were his last words before dying of septic shock.

As they numbly left the room that night, his father was struck by the gear that Alex kept close at hand in his wheelchair for self-defence: the fan to keep him cool, Teflon-coated bandages that would not stick to skin, antibiotic cream, elastic bandage wrap, needles to puncture new blisters, scissors, pillows, syringes for administering antibiotics throughout the day, and even a little bowl in case the drugs made him queasy. As Al put it: “Maybe he was a little soldier after all, with hospital ID bands as ribbons for each of the campaigns he had fought at Sick Kids just to survive.”

By DIANE BRADY

Alex’s Aunt

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To all EB Families, we dedicate this poem in memory of Alex. From his parents Jocelyn Maggs and Al Melkic and his sister Madeline Melkic. We love you Alex.

The Special Child

The child, yet unborn, spoke with the Father,

“Lord, how will I survive in the world?

I will not be like other children.

My walk may be slower, my speech harder to understand,

I may be different. What is to become of me?”

The Lord replied to the child,

“My precious one, have no fear. I will give you exceptional

parents and caregivers. They will love you because you are special, not in spite of it.

Though your path through life will be difficult, your reward will be greater.

You have been blessed with a special ability to love and those whose lives

you touch will be blessed because you are special.”