Two Years In: Where We Are

Two years. It’s hard to believe that’s how long it’s been since we started this journey with the Loving Loic Foundation. In that time, we’ve built something bigger than ourselves—something born out of necessity, but also out of hope.

Running a nonprofit is not for the faint of heart. It has been an incredible amount of work. As some of you know, I work full-time as an attorney. Mark stays home with our kids, which is such a gift. But the work of the Foundation—fundraising, connecting with families, budgeting, planning events, talking with doctors, thinking about long-term steps for gene therapy and other treatments, and so much more—has become a second full-time job.

And then, there is being a mom to a child who has been given a timeline. Many of us think about what we’d do if we were told we had cancer, or if we had “X years left.” Living it is different. There is guilt. What am I missing while pouring my energy into this Foundation? But the other question is, what if I wasn’t doing this? Then we wouldn’t be supporting our family. We wouldn’t be on track for a faster treatment or cure. And I would be assuming we couldn’t succeed—which I refuse to believe.

My days usually start the same way everyone’s do: getting kids ready for school, breakfast, backpacks, beds made. Then I switch hats—juggling clients and cases at the office, while mixing in calls with doctors, attorneys, and researchers working on gene therapy. I process donations, make sure our bookkeeper has what she needs, and reach out to consultants who can help move us forward. I try to carve out moments to post on social media and keep raising awareness. It feels never-ending.

At the same time, we are doing everything we can to keep Loic where he is today. That means functional medicine—working with specialists who look at the whole picture. It means exploring supplements, refining his diet, and keeping him in consistent therapies to support his body and his mind. These aren’t cures, but they are ways of buying Loic time, strength, and stability while we push forward with gene therapy. It’s the day-to-day work of holding the ground we’ve gained, while fighting for the breakthrough that will change his future.

There are times I wonder: should I hire someone? Should I quit the career I’ve built over the past 13 years? I don’t know the answer yet. What I do know is that I’m exhausted—but this is the work I was chosen to do.

We are on track for a cure. Nothing about this is easy. But nothing worth doing ever is. And with your help, we’ll get there.

Thank you for walking beside us, believing in us, and helping us push forward.

— Sherine