CALGARY — A big sushi meal would have once made Josh McQuillin gravely ill, but the British Columbia man can now gorge on one of his favourite foods worry-free thanks to a breakthrough clinical trial for his rare genetic disorder.
McQuillin was 12 when he was diagnosed with urea cycle disorder, a life-threatening condition that causes ammonia to build up in the body and can put a person in a coma.
He had to strictly limit how much protein he ate and took expensive medication several times a day. He could never be too far from a hospital, which made it hard to travel abroad or join friends backcountry camping.
“Now I can eat as much protein as I want. I’m eating differently, sleeping differently, exercising differently,” McQuillin, 30, said during a monitoring appointment at Calgary’s Foothills Medical Centre on Thursday.
“I’ve gained a bit of weight. I’ve never had to fight weight gain before, which is kind of funny. I’ve always been underweight my whole entire life.”
The genes needed to process ammonia were delivered to McQuillin’s liver intravenously. A virus, modified to be harmless, was used as a transmitter. It’s believed McQuillin is the first Canadian to receive gene replacement this way. Only three other people in the world have undergone similar treatment.
McQuillin, who lives in Prince George, B.C., said he felt the results two weeks after the one-time injection.
Aneal Khan with the University of Calgary’s Cumming School of Medicine is leading the trial. He also treated McQuillin in Ontario when he first got sick as a boy.
Khan recalled telling McQuillin’s parents years ago that he wasn’t sure their son would survive.
“Since he’s had this therapy, his ammonia has not gone high, despite him eating whatever amount of protein he wants. It’s a massive change,” said Khan. “We’re very excited — especially for rare genetic diseases, DNA diseases — that we don’t have to tell the parents that stuff anymore.”
Khan said the treatment is being studied for other genetic diseases involving the liver such as hemophilia.
Alberta Health Services has set aside beds in Foothills hospital’s intensive care unit for clinical trial patients. That’s important, because it’s often not known whether an experimental treatment will have serious adverse effects, said Christopher Doig, a medical director in intensive care for the agency’s Calgary zone
“They can get it in a very safe way where they can be very closely watched, very closely monitored. At the same time, we’re not using resources taking away from other patients.”
McQuillin said he’s looking forward to going on a road trip in the United Kingdom this spring without having to worry about his medication or whether the nearest hospital can treat his condition. He can also rest easier when on his forestry job, which once required painstaking meal planning for trips into the bush.
“Everything’s 100 per cent good to go for now,” he said.
“I guess my only concern or fear is they don’t know really how long it will last. But it’s definitely exciting.”
Lauren Krugel, The Canadian Press
Note to readers: This is a corrected story. An earlier version had Josh McQuillin’s last name spelled incorrectly.
#RedDeerStrong – Group focussed fitness studio F45 offers fitness opportunities for isolated athletes
F45 is for people who are already in shape and want to maintain, and for those who really want to kick their cardio up a notch. The business is just a few months old and finds itself fighting to pay the rent as COVID-19 wreaks havoc on group gatherings.
What does your business do?
Our studio is a community and group training focused fitness studio. We are the fastest growing fitness network in the world and are happy to bring this to our hometown of Red Deer. We are adaptable for all fitness levels and deliver a 45 minute high intensity Functional training workout. F45. Click here to see our website.
How has COVID-19 affected you?
Due to the concern for our members we made the decision to close our doors. Days later it was mandated by the government. We are only operational for 5 months so this was a huge shock to our new community and finances. We went to zero income overnight.
What are you doing to adapt?
To adapt we are offering live Zoom workouts to members at less than a 50% discount off their regular membership rate. F45 HQ has also produced workouts that are available on our app. This has been amazing to help our members mental and physic health while social distancing.it also has helped cover a few of our needs to pay within the studio.
What kind of help do you need?
Being a very new busy within Red Deer any advertising and awareness to our studio would beneficial . The government has offered some very helpful solutions foe small businesses which we are grateful for.
What do you want the community to know?
We want our community to know that they are not alone. We offer fun and interactive F45Live video workouts that will keep them healthy physically and mentally at a reasonable cost.
We did our first ZOOM live Friday…we worked out the kinks so now we are ready for a full week next Monday! Today we did the new F45 Program GOAT! Awesome Strength workout with a killer Pod 3! It was so great to feel your energy and see your faces again!
If you would like to join the F45Live ZOOM and F45 Gravity ( adding more programs soon) home workouts, today is your last day to join for 19/week. After today it is 24/week.
Just send us a message and we can hook you up! Thanks to over half of our members who have joined.
If you have family members or friends who may be interested and live anywhere across Canada they too can join our F45Live and receive these programs as well. We would appreciate the referral!
Watch Dr. Deena Hinshaw’s Alberta COVID Update – April 2
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