Finding Your Way After Your Child Is Diagnosed With a Rare Disease

I remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there was an obvious difference between my son and other kids, I was heartbroken and angry. How dare someone tell me what my son's life would look like! Maybe you can relate?

Feel all the feelings

You may not want your child to see any of these feelings, but allow yourself to be sad. When they go to bed, let yourself scream, cry, and ask, "Why me?" As parents, we give them the tools they need to overcome challenges, but we are allowed to feel all the feelings.

Plan as much as you can

Our children didn't ask for this. We, as parents, didn't ask for this. But I brought my son into this world and want to do everything I can to help him succeed.

After receiving the rare disease diagnosis, take time to set up treatment and education plans. I believe it's never too early to have a plan as long as you are willing to adjust it.

Try simple coping methods

Every time your mind starts to wander and question if you will actually get through this, try to remind yourself you will. My coping method was imagining my son walking, running, and playing with other kids his age. I knew he may never get there, but it was the way I coped. Sometimes, we have to take our minds somewhere else to get through the hard days, and that's totally okay.

Stay committed to your plans

As time goes on, you may receive more diagnoses within a main diagnosis or vice versa. My son's original diagnosis ended up being a symptom of his main diagnosis. I felt that as soon as we got an effective treatment plan, our world was flipped upside down, and I was left in the dark.

Was I using the right therapy approach? Should I be doing more? It wasn't easy. I allowed myself to scream, cry, and ask, "Why me?" Then I reminded myself of the mindset I chose 2 years prior, and I stayed committed to our treatment plan.

Small progress is still progress

Receiving a diagnosis of an ultra-rare disease is life-changing. You may have to let go of the life you imagined and start a new one. You may feel left in the dark, never knowing what's to come.

However, try to remain positive, stay on top of symptoms, and stay dedicated to treatments to get you through. Your child needs you, your voice, and your strength.

Even on the days when I think there is no progress, there is. The progress may be small, but every milestone is worth celebrating. The small things are actually big things. You are doing a great job and I am rooting for you and your family.

How did you feel after your child was diagnosed with a rare disease? What have you learned about yourself and your family since then? Share with the community in the comments below.