When Your Child Is Somewhere Between ‘Sick’ and ‘Healthy’

When our son was diagnosed with a rare genetic condition shortly after birth, the first question my husband and I asked was, “What do we do?”

The answer will not surprise anyone who has dealt with a rare illness: wait.

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.