Leif, 5.Katie Muller
Leif Elliott Mickelson: Son. Grandson. Budding musician. Power-chair driver. Born March 15, 2012, in Victoria; died Aug. 19, 2017, in Victoria; of complications from nemaline myopathy; aged 5.
Leif had a particularly rough start.
He was born a month early, and it soon became clear that his health was affected by much more than his early birth. He had club feet and his little hands were twisted into sideways fists. But more importantly, he didn't seem to swallow and he was constantly setting off the alarms in the NICU. No one could figure out what was wrong.
Leif spent another 3 1/2 months in hospital the before finally going home with a feeding tube and pump, a CPAP machine, an oxygen-saturation monitor, a suction machine, night nursing and regular visits from a variety of therapists.
In fact, it took 4 1/2 years to find a diagnosis. Leif had a severe form of nemaline myopathy, a type of muscular dystrophy. There would be no treatment or cure. Leif's mind was unaffected, but his body would always be very weak. The greatest danger was his breathing, due to his weak airway and respiratory muscles.
After a while, Leif began to flourish. He was never able to sit up on his own, or stand, or even roll over. But by the time he was one year old, he was humming songs. His bright eyes followed us and lit up with our stories. He easily learned to operate an iPad. He played with lightweight toys and figured out how to manipulate things even with his limited strength. His hands opened up and gained wonderful function, and by the time he was 2, he had learned enough sign language to communicate his wants and needs.
When Leif was almost 3, he received his first power chair and our lives were immediately changed. While he did damage all of our walls, doorframes, doors, cupboards, furniture and large appliances, Leif quickly learned to drive and gained an independence we never imagined possible. He was suddenly in control of where he was going, and in which direction he was looking. He could breeze through the kitchen and look through all the drawers. He could take a toy off a shelf and bring it to the table to play with. These are things that most people take for granted, but for Leif, it was a miracle. He was an expert driver. He learned his chair's exact dimensions and squeezed through unlikely spaces. He went up and down slopes and through rough terrain without fear.
When he was 4, Leif began to talk. By the time he was 5, he was speaking in full sentences, playing out elaborate imaginary games, asking hundreds of questions every day and telling everybody what to do. Leif went to music-therapy lessons, he could carry a tune and would regularly improvise his own songs and dance routines while floating in the bathtub. He also loved playing video games and teamed up with his dad to complete all the levels on Donkey Kong Country Returns.
Just weeks before his much anticipated first day of kindergarten, Leif's breathing became obstructed while he slept and he went into cardiac arrest. He died the following day in the hospital.
Leif was inquisitive and opinionated, independent and strong-willed, joyful and loving. He was really funny. When we walk through our neighbourhood now, we are constantly reminded of him – racing down the sidewalks, waving at buses, squeezing into hiding spaces, splashing in puddles and occasionally needing our help when his wheels needed a bit of extra traction.
Emily Boyle and Andrew Mickelson are Leif's parents.
Lives Lived celebrates the everyday, extraordinary, unheralded lives of Canadians who have recently passed. To learn how to share the story of a family member or friend, go to tgam.ca/livesguide