Rare Disease Day 2024

 

It's funny how ten people can hear the lyrics to the same song and interpret the words ten different ways. The first time I heard "Footprints on the Moon," I sobbed. The only person or thing I could envision was Jayde and her journey. I look at these pictures and am abundantly thankful for how far she has come. Still, I carry a hope that the brilliant doctors will soon discover the genetic links necessary to crack the elusive code, changing the face of medicine and our lives. I understand how fortunate Jayde is to have been placed with Johns Hopkins Children's Center. My immense gratitude for the few doctors who made it possible to still see those bright green eyes every day never wanes.

To the average person, Rare Disease Day is just another day, yet to our family and many like us, it is 365 or, in this year's case, 366 days a year. There was a time when I heard the word rare, and my mind immediately thought of something beautiful, special, and unique. Anytime I look at my brave daughter, I know I am not wrong. However, when it comes to a rare illness, rare is also a complex and frustrating, beating your head against a proverbial wall and shouting until your voice is hoarse–to bring attention to the medical community about something invisible to the even trained eye battle. Rare is understanding for every good day, there is a slew of bad ones waiting to wreak havoc. Rare is the nurse who is a caregiver, therapist, friend, and family all in one beautiful person. Rare is the husband and father who struggles with his own pain every day yet still takes care of his girls. Rare is our way of life.

Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, Chiari Malformation, Craniocervical Instability, Mast Cell Activation Syndrome, Ehlers-Danlos Syndrome, and Tarlov Cyst Disease. I had never heard of these illnesses until we were diagnosed. Each of my and Jayde's illnesses was and is still consistently overlooked. Imagine growing up being told it's all in your head. Your pain is just growing pains. Now, imagine your child begins exhibiting those same symptoms. You find a determination as fierce as your love. While some of Jayde's illnesses are rare, our journey and her story are anything but rare. Jayde's health was not taken seriously until she began seeing doctors at Johns Hopkins Children's Center. We are fortunate to have Hopkins in our backyard. Now, think of the 300 million people worldwide who don't have the luxury of quality healthcare. I don't know how to solve the problems of inadequate healthcare and uneducated or egotistical doctors, but I know it begins with awareness. The purpose of this day is to globally achieve equitable access to diagnosis, treatment, and care for individuals whose lives are affected by a rare disease. Today, we raise awareness, while the rest of the year, we fiercely fight.

Rare is many, rare is proud, rare is strong. 🦓

https://rarediseases.org/

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