I’m Just a Mom (and That’s Exactly Why I’m Fighting)

Recently, I sat in a conference room in our nation’s capital surrounded by people with long titles, Ivy League degrees, and acronyms after their names.

Doctors. Scientists. Policy experts.

And then there was me. Just a mom. I remember looking around the room, thinking, What am I doing here? Do I really belong here?

But then I thought about my daughter, and I knew exactly why I was there. Because moms don’t get the luxury of sitting on the sidelines when it’s their child’s life at stake.

Let’s rewind.

In 2021, we welcomed our second daughter, Harlow. Within minutes of her birth, celebration turned into fear. She scored low on her APGAR test and had very low muscle tone. Doctors gently explained that this could mean hundreds of possible diagnoses.

For nine months, we lived in limbo — specialist visits, tests, scans, endless waiting.

Finally, we got an answer: Pyruvate Dehydrogenase Complex Deficiency (PDCD). It’s a rare mitochondrial disease that prevents the body from properly turning food into energy. In simple terms, her brain and muscles don’t get the fuel they need to grow and function.

There is no cure. Very few treatments. And most families are told to “manage symptoms” and hope for the best. No parent is prepared to hear that.

READ: Rare Disease Awareness: Harlow’s Story

After the shock wore off, something else kicked in. Determination. If there wasn’t a cure, we would help fund one.

If no big investors were studying our kids because the patient population was “too small,” then families like mine would step in ourselves.

So I joined other parents and helped build the Hope for PDCD Foundation, a nonprofit started not by scientists or biotech executives, but by moms and dads who refused to accept “nothing can be done.”

Since 2022, together we’ve raised nearly $1.5 million for research and support. Bake sales turned into golf tournaments. Text threads turned into fundraisers. Backyard ideas turned into community events.

Right here in our Jacksonville community, my family hosts an annual clay shoot called “Hope for Harlow: Clays for a Cure.” Something that started simply because I needed to feel like I was doing something instead of just waiting. What began as one small idea has grown into hundreds of neighbors, friends, and local businesses showing up to help us fight for kids like Harlow. You can learn more or get involved with our 4th annual event on March 24 at hopeforharlow.com.

That’s the reality of rare disease. When your child is rare, you become the researcher. The fundraiser. The marketer. The advocate. Because if you don’t fight for your kid, who will?

Lately, that fight has taken on a new weight. Our battle is now with the U.S. Food and Drug Administration.

Harlow has been receiving a decades-studied therapy called DCA through a clinical trial. It’s a treatment many families, including mine, have seen help stabilize their children’s energy, strength, and development. For the first time, we felt real hope.

But because of regulatory delays and setbacks, that access is now uncertain. After finally finding something that may help my daughter, we’re being told it could be taken away.

No parent should have to fight this hard just to keep their child on a medication that’s already helping them. For rare disease families, delays aren’t abstract. They’re birthdays missed. Skills lost. Time we don’t get back.

But here’s what I’ve learned. Every time I walk into those rooms and think, “I’m just a mom,” I remind myself: That’s exactly why I belong there. Because no one will fight harder than a parent.

Yes, I’m just a mom. But that mom has a lot of titles: Working mom. Girl mom. Loving mom. Medical mom. Advocate mom. Determined mom. Rare disease mom. Faithful mom.

And when it comes to Harlow and kids like her, I’ll also be a relentless mom.

So, if you see a mom sharing her story, organizing a fundraiser, emailing lawmakers, or refusing to accept “wait and see” as an answer, know this: She’s not being dramatic. She’s being brave.

Because behind every rare diagnosis is a parent who didn’t choose this fight — but will never stop showing up for it. And sometimes, the most powerful person in the room isn’t the one with the degrees. It’s just a mom.

About the Author

Kim Higbee is a Jacksonville mom of two girls, Cassidy (6) and Harlow (4), a proud law enforcement wife to Rick, a full-time Account Manager at Carrier Enterprise, and a board member of the Hope for PDCD Foundation. Most days, you’ll find her juggling work, advocacy, dance studio nights with Cassidy, and therapy appointments with Harlow — doing her best to soak up the little moments while fighting big battles for rare disease families.