HaPpY rArE dIsEaSe DaY!
Rare Disease Day is a day that reminds the world that rare doesn’t mean small. It doesn’t mean insignificant. It doesn’t mean invisible.
It means there are families like ours — loving fiercely, advocating loudly, and learning to build beautiful lives in the middle of something we never would have chosen.
Jack’s life is beautiful. It’s big and full of love and fun and smiles.
Not because ALD is easy.
Not because the road has been smooth.
But because he is surrounded by smiles and his duct tape.
If you’ve followed this blog for any amount of time, you know what that means. Smiles are the joy, the hockey nights, the ordinary Tuesdays that feel like victories. Duct tape is the holding-together — the people in Jack’s life that are always here to help, to laugh, to figure out how to have fun with JackO. Duct tape is also the logistics, the medical appointments, the day programs, the caregivers that have become Jack’s Other Mothers (they are huge part of the smiles too), the medications, the research, the hard conversations, the resilience that shows up when it has to.
Jack’s life is held together by all these things, but I want to give a special shout out to the medical professionals who dedicate their careers to rare diseases, researchers who refuse to stop until treatments become possible.
The treatments Jack has received did not appear out of thin air. They are the result of decades of science, advocacy, fundraising, and families who said, “Not good enough. Keep going.”
We are profoundly grateful.
To celebrate Rare Disease Day, our family created a fundraising page for ALD Connect.
Thank you to every friend and family member who has already donated to ALD Connect through our page. JackO sends each of you a warm smile, a killer hug and a lick if you’re really lucky. Thank you to members of the ALD community who understand this life from the inside out. And, a special thank you to the under 30 crowd who made donations. I know times are complicated and wallets may be thin. My niece, Sara, gets a shout out for being the youngest giver and I also want to recognize and thank several of Anna’s friends — some who have known and loved JackO for many years, and some who haven’t yet had the pleasure of meeting him.
Many of these kids (always kids to me) will soon begin their lives as physicians. The fact that they have ALD on their radar — that this rare disease is no longer invisible to them — matters more than they probably realize. One day, they will sit in exam rooms and carry that awareness forward. That’s how change happens.
That’s how rare becomes recognized.
If you feel moved, I invite you to make a donation to ALD Connect through our fundraising page. Your support funds research, education, and connection for families navigating this disease. It helps ensure that more children with ALD, more adults with ALD and more families dealing with ALD every single day (NOT just Rare Disease Day) have access to treatments, information, and community.
Rare Disease Day is not just about what we are fighting — It is about what we are building!
Love, Jess
smiles and duct tape 