Mason, Elijah, Juliana, and Josiah make up the vibrant Archibald family. Each of the boys is affected by Barth syndrome, which presents very differently for each of them, and despite the challenges they navigate every day, they all learn from and support one another in embracing life’s adventures together.
Mason was just six days old when he went into heart failure. He was six weeks old when he received a heart transplant, and he now navigates neutropenia, feeding difficulties, and muscle weakness.
Elijah was born small but without serious health concerns, and doctors initially attributed his size to normal variation. "You make small babies," they told Josanne. It wasn’t until Elijah was 9 years old and Mason was born that he was diagnosed with Barth syndrome. At 15, Elijah began having difficulty gaining weight and was inspired by his little brother to request a G-tube, which helped him reach a healthy weight "almost overnight."
Elijah and Mason were 17 and 8 when Josiah was born with severe heart failure even worse than Mason's. Josiah was listed for a heart transplant. With Josanne’s connection to the BSF community, she and Damion were able to get the help needed to advocate for use of elamipretide. After about 5 months, the amount of blood Josiah’s heart pumped improved from only 12-15% at birth to a normal 65%. He was removed from the transplant list entirely.
The experience reinforced the Archibalds’ deep connection to the Barth Syndrome Foundation community. “I just saw how much the community surrounded me when we found out we were pregnant with Josiah,” Josanne reminisces. “Everyone pretty much just jumped in and said, ‘We'll do whatever it takes. We'll talk to your doctors, we'll coordinate, we'll get you on the program for elamipretide’… And you can't ignore that, right? Then my thought process was, what can I do?” The Archibald family has continued to show up for the Barth syndrome community—sharing their story during the FDA review process, speaking with lawmakers in Washington, D.C. during Rare Disease Week in February 2025, and standing with other families after the FDA’s decision not to approve elamipretide.
The Archibald family loves to travel together and refuses to let medical challenges define their lives, always finding ways to navigate Barth syndrome with grace and determination.
"The kids love swimming," Josanne explains, and the kids’ favorite trip was a family vacation to Punta Cana. "We always have to be cognizant of when we travel. It's like a whole ensemble with medication and everything. We have a lot of suitcases when we travel—it's a lot, but we don't let that stop us." Julianna often asks when they can go back.
Josanne & Josiah just came back from a trip to Trinidad, Josanne’s home country. “The anxiety of packing and making sure he has formula, medication, everything… it was overwhelming, but I would do it again.” For the Archibald family, embracing those simple joys while navigating the complexities of Barth syndrome has become their extraordinary strength.
"The kids have too many limitations," Josanne reflects, "and they should still be able to enjoy the simple things. Let's go on a trip. We'll figure it out. We'll get everything together. We'll be the ones in the airport.”
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