In their Woodbridge home, just north of Toronto, siblings Claire and Josef Gortnar keep busy playing indoors during the coronavirus pandemic.
“Knowing that my two young children have a terminal illness with a compromised immune system makes them an easy target for a virus like this,” explained mother Terri Gortnar.
The siblings are fighting a rare, deadly disease.
CLN2 Batten disease is an inherited nervous system disorder. No specific treatment is available to cure it, but treatments exist to manage the symptoms. Over time, Batten disease damages the brain and nervous system.
The risk COVID-19 poses to children like the Gortnars is serious.
“My daughter would not survive this. Batten children usually pass away from a respiratory disease like pneumonia or even something as common as the flu,” said Gortnar.
Precautions being taken in households across Canada right now are not new to the Gortnars, but they are causing a challenge for them.
“I hope this pandemic opens everyone’s eyes to what parents of medically fragile children face on a daily basis. We constantly wash our hands, we are wiping things down … I wasn’t able to get out of my house in time to buy Lysol wipes or hand sanitizer,” said Gortnar.
“We are a family that needs those things on a daily basis regardless of what is happening in the world and now we have none.”
Experts say people with chronic conditions that affect the immune system can develop serious complications from COVID-19.
People have been taking to Twitter urging others to heed the experts’ warnings and practice social distancing.
A 25-year-old woman named Savannah Seger with rheumatoid arthritis tweeted out, “Please consider that those vulnerable to COVID-19 are not always elderly.”
Another woman, Anne-Marie Roy, posted a picture of her baby girl, “As a cancer family we are no stranger to self isolation and quarantine. In this whirlwind, please keep our daughter Adella in mind…”
In Tottenham, Ont., the Larocque brothers, who both have Cystic Fibrosis, are used to social distancing.
“I fear all viruses equally. They all have harmful potentials,” explained their mother Sasha Haughian.
“We live COVID-19 every day. What people are fearing to experience if they catch this virus is what people with Cystic Fibrosis do experience every time they catch a common cold or a flu.”
Adding another layer to the family’s level of concern is the fact that only one of the boys has access to a potentially life-saving drug.
Younger brother Joshua did not fit the criteria for a clinical trial, and the province is not currently funding the medication the family said he desperately needs.
That means, right now, during the pandemic, his risk of getting more sick is high.
“Joshua has still not been able to access Orkambi so I am definitely extra nervous for him right now,” said Haughian.
She noted her family is used to sanitizing the home every day in fear of germs infecting the boys’ lungs and every year she supplies the teachers with hand sanitizer and Lysol wipes for the classrooms.
“One thing that really needs to be taken seriously is when people say ‘only’ the vulnerable are at risk, well your ‘only’ is my everything,” she said.View link »