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These Rare Diseases Will Never Get My Sons’ Hearts


Dear Infamous Pelizaeus-Merzbacher Disease and Fibrous Dysplasia,

I need to get it out of my system. I detest you. Yes, both of you.

I came to know you two years ago, and since then, you have made my life, and that of my family, a nightmare. I know I cannot wish you away, and the more I know you, the more I realize you are here to stay. Nonetheless, expect me to fight you with all my strength for every smile you steal away from my children, every moment of happiness you ransack from their hearts, and every second you force us to spend in hospitals, doctor appointments, and therapies rather than enjoying the thrill of a bicycle ride, a walk on the pier, or a vacation on a sandy beach.

The fact that you went after two of my children makes me abhor you even more. Both of you appeared one after the other as if you were invited to a party. Well, you have pooped all over my children’s party. I would have preferred you had surfaced only on me.

Fibrous Dysplasia, you have already caused a limp on my 6-year-old, a broken femur, a surgery to install an intramedullary rod (a surgery that repeats every few years until he finishes growing up)…

All the while, you have been eating away his other femur, and he is in need of another surgery in the next few months. This will continue all his life. You must feel proud of yourself.

You are in most of his legs and arms, and I am left wondering for his future. Lately, he has been waking up not wanting to go to school because his legs hurt. Though he soon realizes the fun he has at school and makes the effort to go. I carry him through the corridors to minimize his walking, and he appreciates it with an “I love you, Dad.”

He wants to be a scientist and an American Ninja Warrior. I will not crush his dream, hence I will encourage swimming to keep him active. You have rendered me incompetent to help him get rid of you, so we will work around you.

I had put a formal request to the doctors to take away my bones and give them to my child… sadly, that is not even an option. You are as much part of him as my own DNA.  In the spirit of Christina Schulz’s letter to her rare bone disease, “You may take his legs, but you will never get his heart.”

Pelizaeus-Merzbacher Disease, you have come after my newborn. You showed up with your symptomatic friends: auditory neuropathy, nystagmus, and hypotonia, just to keep me on my toes researching like mad.

My son has been prickled and poked so many times I lost count. You have hid away through generations, but I finally brought you out into the open. My son will be your last stop in this family.

I found you through the Mary Poppins’ bag of rare diseases. You are a leukodystrophy that affects his central nervous system. You do not let his myelin generate properly. Yes, I know who you are. You will not allow him to sit, crawl, walk, or talk. You will make him struggle to eat and breathe. You are despicable.

But as much as you want to bring down my son, he will fight you. He is Mighty. He will smile through every conquest. He will smile from the first light of dawn to the last crepuscular ray. At 2 years old, he applauds, and babbles “paz” (peace). He has found a way to drink water and eat eggs and ham. It is those small miracles you cannot take away. Those give me hope that maybe, just maybe, we will defeat you.

I promise you, he will live and not just survive.

The day you are both obliterated from this earth, I will sing praises. Children and parents should never have to meet you. You are not welcome.

I will end with one of my older son’s favorite bedtime stories, dedicated to both of you:

Go Away Big Green Monster, by Ed Emberley

Big green monster has two big yellow eyes,

A long bluish-greenish nose,

A big red mouth with sharp white teeth,

Two little squiggly ears,

Scraggly purple hair,

And a big scary green face.

But, you don’t scare me!

So go away, Scraggly purple hair,

Go away Two little squiggly ears,

Go away long bluish-greenish nose,

Go away big green face,

Go away big red mouth,

Go away sharp white teeth,

Go away two big yellow eyes,

Go away Big green monster.

And don’t come back, until I say so.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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