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It will soon be a year since I was blessed with the privilege of becoming a mother to my beautiful son, JAX: a tiny miracle who changed my world forever. Like every new parent, I dreamed of all the ordinary things ahead of him: first steps, scraped knees, soccer games, and carefree summer days. I never imagined that so soon I would be learning medical terms I had never heard before or facing the heartbreak of discovering that Jax has Cystic Fibrosis caused by a rare and severe “nonsense” mutation” which is a genetic form of CF that does not respond to the medications currently available for many others with the disease. Cystic Fibrosis is a life-shortening, fatal genetic condition that affects the lungs and digestive system, causing thick, sticky mucus to build up in the body, leading to progressive lung damage and difficulty absorbing nutrition necessary for survival. (https://www.cff.org/research-clinical-trials/types-cftr-mutations )
The hardest words I’ve ever heard were that, right now, there is NO treatment or cure for children like my son.
But where there is heartbreak, there can also be hope.
While incredible progress has been made for some people living with CF, there is still so much work to be done so that every child with CF especially those with rare, severe mutations is not left behind in the race for treatment and cures.
Jax’s own doctor at the Montreal Children’s Hospital, Dr. Larry Lands is one of the leaders of a groundbreaking research project called “Leave No One Behind.” This research is focused on developing genetic therapies specifically designed to target nonsense mutations like Jax’s, working to correct the faulty CF gene at its source. For families like ours, this work represents something we desperately need: the real possibility of a future where our children are no longer overlooked simply because their mutations are rare.
For Jax’s first birthday, instead of gifts, we are doing something different. We are raising funds to directly support this research; the work that could give our son, and so many others like him, a chance at a healthier, fuller life.
Every dollar raised will go toward advancing Dr. Lands’ research through the "Leave No One Behind" project helping fund essential lab equipment, specialized supplies, research staff, and the testing needed to move these gene-editing therapies from scientific discovery toward real-world treatments for children who currently have no options.
This fundraiser is deeply personal to me as Jax’s mom. It isn’t just about supporting science but it’s about fighting for my child’s future. It’s about standing up for children like Jax and saying that they deserve the same chances, the same hope, and the same fighting chance as every other child. No family should ever be told to accept, "There’s nothing available for your child".
Every child deserves to grow up breathing freely, dreaming fully, and living without the limits of a disease they never chose.
This research gives families like ours something that is priceless: hope — hope that our children’s futures can look brighter than today’s reality. If it succeeds, it won’t only change Jax’s life — it could change the lives of countless children and families still waiting for answers and treatments and cures.
From the bottom of my heart, thank you for celebrating Jax’s first year with us, for believing in this fight, and for helping us build a future where no child is left behind. ❤️