Rare Disease Day a celebration for Chatham teen living with ALGS

theobserver.ca · Feb 27, 2026 · Collected from GDELT

Full Article

Skip to Content News Local News Provincial Canada World Special-Sections Sports Sports Betting Local Sports Baseball Basketball Football Curling Hockey Auto Racing Other Sports Entertainment Local Entertainment Movies Music Television Books Gaming Celebrities Life Travel Health Food Comics Puzzles Advice Opinion Column Editorial Letters All Newspapers Advertising Advertising With Us Advertising Solutions Postmedia Ad Manager Sponsorship Requests Classifieds Obituaries Lives Told Business Ads Jobs Driving Ontario Farmer Healthing Diversions Puzzles Comics Puzzmo Newsletters Profile Settings My Subscriptions Newsletters Customer Service FAQ News Sports Entertainment Life Opinion All Newspapers Business Ads Jobs Driving Ontario Farmer Healthing Puzzmo Newsletters NewsLocal NewsRare Disease Day a celebration for Chatham teen living with ALGSPublished Feb 27, 2026 • Last updated 3 hours ago • 3 minute readThe future is looking good for Chord Jaques, 14, who was diagnosed at age 2 with Alagille syndrome, a rare liver disease that causes severe, persistent itching. He has been thriving on the liquid form of the medication Livmarli, but is looking forward to the new tablet form of the medication recently approved for use. Chord is seen here in his Chatham home playing a video game. (Ellwood Shreve/Chatham Daily News)Saturday marks Rare Disease Day and Chatham teen Chord Jaques, who is among the estimated 300 million people worldwide living with a rare condition, has plenty to celebrate.Diagnosed at age two with Alagille syndrome (ALGS) after being born with a cholestatic liver — a rare condition that affects about one in 30,000 to 50,000 infants — early life was quite an ordeal for Chord and his parents Tara and Ben Jaques.Recommended VideosPeople with a cholestatic liver have either too few bile ducts or the ducts are too small, resulting in not enough room for bile to get through, so the body reabsorbs it and causes a person to itch from inside the body out.When Chord frantically tried to scratch an itch he could never reach, he often drew blood and left scars on his body.But, life began to improve for Chord in March 2021 when he was part of a trial for the liquid medication Livmarli, developed by Mirum Pharmaceuticals. By the summer of 2023, Health Canada had approved the drug to treat ALGS.Livmarli has been a life-changer for Chord and his family.“It’s pretty good. The itching has become less of a burden now,” Chord said.His mother Tara says, “The itching doesn’t control everything anymore.”Today, Chord enjoys playing basketball in the local Special Olympics program and taking a cooking class at the Children’s Treatment Centre of Chatham-Kent.There is more good news with the life-changing medication Chord relies on, because in early February Health Canada approved the use of Livmarli pills to treat ALGS.“Livmarli’s tablet formulation provides an important new option for patients with ALGS,” said Jamie Twiselton, general manager of Mirum Pharmaceuticals Canada in a media release. “With liquid formulation for younger patients and a convenient one tablet per dose option available for older patients, Livmarli now provides greater dosing flexibility, supporting continuity of care as patients with ALGS age.”Dr. Or Steg Saban, division of gastroenterology, hepatology and nutrition at the Hospital for Sick Children in Toronto said, in the release, as children with AGLS grow, treatment needs can change.She says the availability of a tablet form of Livmarli in Canada “provides an additional option for appropriate patients, which may support treatment adherence and continuity of care while continuing care to address cholestatic pruritus.”Tara Jaques said Livmarli pills don’t need to be refrigerated, which will be easier for travelling, especially to regular appointments Chord still has at Sick Kids Hospital in Toronto. She added the Livmarli pills can be stored with Chord’s other medications.“I think it’s going to be a lot easier,” she said.Chord is looking forward to not having the strong taste of the Livmarli liquid.“A lot of times when I take (the liquid), I get a little shiver,” he said.Chord joked he’s reminded of the Buckley’s cough medicine slogan, ‘It tastes awful, but it works.’What isn’t a joke is what Livmarli has done to improve life for the Jaques family.“I think my life is going pretty well,” Chord said.He is looking forward to attending high school in September. He also has an interest in drama and the arts, particularly comedic improvisation.Now that he isn’t distracted by a constant itch, being in class is more enjoyable as well as one of his favourite activities, going to see live performances at the Stratford Festival.But there is still no cure for ALGS.Jaques said it is about symptom and physical management.She said Chord sees a neurologist and a cardiologist and a gastroenterology team monitors his liver, and he goes to physical therapy to work on his limb difference.But, there is hope for her son’s future, which wasn’t guaranteed when Chord was first diagnosed with ALGS, Jaques said.“He’s absolutely thriving now,” she said.“The goal is to have your kid grow and enjoy life, it’s incredible,” she says. “We never, ever imagined he’d be here today and doing as well as he is today.”Chord is glad to have a future with his family and friends.Living with a rare disease has also taught him an important life lesson.“Don’t let people tell you, you can’t do something,” he said. “Find a way to prove them wrong and show them what for.”eshreve@postmedia.com Join the Conversation This website uses cookies to personalize your content (including ads), and allows us to analyze our traffic. Read more about cookies here. By continuing to use our site, you agree to our Terms of Use and Privacy Policy.