Back when everything was different, I set out to interview five extraordinary families linked by two things: kids with incredibly rare genetic disorders and a walk-through-fire devotion to their daughters.
My colleagues (photojournalists Eric Wynne and Tim Krochak) and I visited family homes. We played with the kids on the floor, laughing and making squishy faces at them. And more than once, wiping off a camera lens when a curious child figured it looked tasty enough for licking.
Each family welcomed us with warm hearts because they want their stories to be told. They want to be heard.
These are stories of shock, fear, finding answers, then discovering ways to cope with harrowing air ambulance trips, long hospital stays, and a completely new way of daily life.
Over the next five days, parents will tell you what it feels like to watch their children seize, and knowing there’s nothing they can do about it. They’ll talk about being at the end of their rope financially, and how their communities lift them up.
You’ll read about how they’ve found each other, their tribe of parents, who might not be dealing with the same genetic disorder, but know exactly what they’re going through. They offer each other advice, support, a shoulder to cry on and an understanding that, while the disorders are rare, they’re certainly not alone.
But a lot has changed in the past few weeks. Each of these five children would be in serious trouble if they caught COVID-19, whether it’s because they have a weak immune system or small airways.
“The virus makes me petrified for Georgia. She has no immune system and this could kill her,” said Kristen Langille from Truro of her seven-year-old daughter Georgia, who must use a wheelchair.
“We can only hope and pray that people are staying home and not going out. This is very serious and I pray Nova Scotia started the process early enough that it won’t blow up here.”
Emily Stewart, from Woodstock, N.B., has a two-year-old daughter, Ivy, who has small airways. Stewart is extremely worried about how fast things could take a turn for the worst.
“I worry that some people don't understand the importance of social distancing and how flattening the curve could help people like Ivy,” she said in an email. “It brings tears to my eyes when I read posts about if it spreads there is a potential there may not be enough ventilators. Ivy is a difficult intubation and ... we live five hours from the nearest children's hospital (IWK Health Centre).”
All of these families are worried and hunkering down, like the rest of us. But, as you read, their stories, like them, are COVID-19-free.
I hope you enjoy meeting them as much as we did.
Read the series:
Part One, The Gardiner family: ‘Nature chose her.’ Toddler faces 40+ surgeries in her lifetime
Part Two, The Langille family: Little Georgia has the rarest of disorders. ‘We just do the best we can.’
Part Three, The Jacksons: ‘I know my little girl is in there’; Truro family lives with heartbreaking uncertainties
Part Four, The Stewarts: Rare genetic disorder means this toddler smiles with her eyes
Part Five, The Turners: Ketogenic diet has dramatic effect on Timberlea girl's seizures
