How the Rare Disease Community Made Me a Better Person

On Rare Disease Day, it’s important to remember that parents of medically complex children aren’t heroes; we’re just regular people doing the best we can to love our kids through difficult circumstances.

While I’m no hero, I do believe I’m a better person because of what my child and others in this community have taught me.

Shortly after my son was born, he was diagnosed with a rare genetic condition with an unknown prognosis. Overwhelmed by fear and uncertainty, my husband and I decided not to share the news with many people.

We relied on long-distance family and a few close friends for support. We desperately searched for hope in the scant medical information available online. We faced countless tests and doctor’s visits alone.

After nearly a year of privately navigating a complicated and terrifying situation, we felt comfortable enough to open up about his journey. I wrote a story on The Mighty that we shared with friends and family.

The response made us feel more loved than we ever could have imagined. People called, wrote, texted, and sent messages to offer support. Overnight, we had a community rooting for us, and the uncertain future was suddenly so much less overwhelming.

But then something even more remarkable happened: families we had no idea were facing similar situations reached out.

An old friend shared that her daughter had also been born with a rare genetic condition. A friend from work confided she was managing a chronic, debilitating illness. Another colleague told me for the first time that her son is autistic. A college friend revealed that her son had dealt with medical issues since birth.

Even close friends opened up to us differently. When I struggled with kids asking about the growth in my son’s eye, a friend shared her experience with kids commenting on her son’s speech disorder. Another family got in touch when they learned their daughter was on the autism spectrum, because they knew we could relate in some small way.

It suddenly became clear how many people around me were fighting battles, and I started to see the world differently.

I realized the picky eater might have special dietary needs. The guy holding up the line could be struggling with intense pain. The moody coworker might be caring for a sick child.

I noticed the “innocent” jokes on sitcoms about skin conditions, eye problems, and other physical differences, and tried to become more sensitive in the words I myself used.

I became more aware, more patient, and on my best days, a little gentler with the world around me.

My son will have several surgeries when he’s older to remove growths on his head and eyes, but otherwise, he’s a happy, healthy toddler. My gratitude for his health is matched only by my deep empathy for those overcoming even greater obstacles.

My hope is that our experience with his health condition and our connection to this community will help us raise him to be gentle and compassionate to everyone he meets.

So, thank you to everyone who has reached out and opened up. You’ve reminded me that we’re not alone, and you’ve helped me become a more understanding person.

I hope we can all feel like we’re a little more similar than different, and each feel a little closer to one another this Rare Disease Day, regardless of our individual challenges ahead.

Together we are strong.