A Letter to the Rare Disease That Took My Daughter


Thank you rare disease for taking me on this path of what is now called grief.

Thank you, rare disease. Because of you, you have taken my 8-year-old daughter’s life and now I am forced on a road to recovery — a recovery that will last forever in my lifetime.

Thank you, rare disease. Because of you, I now know what excruciating deep pain feels like.

Thank you rare, disease. Because of you, you have introduced your ugly head into my family’s life. We now know what it is like to have watched a child suffer through pain and attend countless medical appointments and procedures. Because of the toll of your symptoms, we spent numerous nights being up around the clock monitoring every breath she took, and so much more.

Thank you, rare disease. Because of you, no one really knew how to navigate your world. We did everything to survive while being sleep deprived, depressed and financially challenged.

Thank you, rare disease. Because of you, you weren’t on the list for an approved diagnosis. Therefore, the processes became much more troublesome for our family just to get the proper medical necessities for our child.

Thank you, rare disease. Because no medical doctor really understood you, we felt alone, confused and angry.

Thank you, rare disease. Do you know how hard we worked to advocate for our child because she had something so rare?

Thank you, rare disease. Because of you, I now know what it’s like to experience picking out a headstone.

Thank you, rare disease. Even though I am walking through grief, it has made me look at what you have taught me in my eight years of being a caregiver for a terminally ill child. Through this, I learned what it’s like to overpower you.

Thank you, rare disease. Your existence has shown us that when two parents want to do everything possible to bring awareness, doors will open and great things happen.

Thank you, rare disease. I see you from time to time affect other children and families, and I can only hope and pray you are overpowered by them as well.

Thank you, rare disease. Because of you and knowing your time limit, I had to prepare my daughter’s funeral and grieve her loss while she was still alive.

Thank you, rare disease. Because of you, I need to steer the ship to continue on with my life without my child. But I have hope that someday, you won’t be rare anymore. A cure will be found to destroy you.

Thank you, rare disease. Because of you, my daughter showed me what it’s like to have strength and courage, and she became my biggest superhero.

Sincerely yours,
Momma who grieves for her child


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