I invite you to embark on an emotional journey with me. If you are a parent, a relative, a friend, or a caregiver—this journey speaks to all of you. It’s not a pleasant trip, but for some families, it’s a reality they must face.
Picture this: You’re handed a beautiful little one right after birth. This could be your child, a relative, or a close friend’s baby. Imagine witnessing this child blossom into an inquisitive, lively toddler, full of energy and curiosity. Now, envision waking up one morning to find this child sitting quietly in a corner, tears streaming down their face, and you can’t quite grasp why. They feel hot, and your instinct tells you that they might be coming down with something.
Your family doctor confirms your suspicions but assures you it’s just another ear infection—his tenth since birth. “It’s quite common for children his age,” the doctor says. The ear infection quickly leads to a chest infection, and once again, you find yourself back at the clinic. “It’s just a rough patch. He’ll be okay,” you’re told.
You can’t help but wonder where he inherited those striking eyes, those big hands, or that unruly mop of hair. And what’s with that round belly? You sense something is off but struggle to articulate it to the doctor. You try your best: “I think he might have hearing loss; he seems detached from people and his toys. And, if I’m being honest, he doesn’t look like either of us.”
“Let’s test his hearing. Worst-case scenario, he may need tubes. Many kids do, and they usually outgrow it,” the doctor reassures you, oblivious to your concerns. You want to scream—he’s not just like any other toddler! After several therapy sessions for the hearing loss, the experts insist he will eventually catch up, but you feel a nagging doubt. Your once vibrant toddler now struggles to do things he used to manage easily.
As time passes, his speech regresses, and the specialists chalk it up to his hearing impairment. “It’s normal for kids with hearing issues,” they say. “He might need hearing aids down the line.” But you argue, “He’s not using the words he once knew! He won’t play. He walks on his toes and is constantly in and out of the hospital with chest infections. This can’t all be due to hearing loss!”
After years of back-and-forth with various medical professionals, you find yourself in a hospital room again, this time with your now five-year-old son. He’s prepped for surgery to have yet another set of tubes inserted, despite the same specialist telling you that three sets were the limit. Your heart races, and you can no longer contain your frustration.
“NO MORE TUBES! They aren’t helping!” you shout, feeling the world around you blur. You demand to speak with someone else.
Then, you meet a doctor who finally listens. This new doctor considers your concerns about your child’s physical appearance and expresses genuine worry about his frequent hospital visits. “You’re right to be concerned. We’ll figure this out together,” they promise.
Three weeks later, those words shatter your world:
Genetic
Rare
Metabolic
Mucopolysaccharidosis
Progressive
Life-limiting
Terminal
No cure
Hunter Syndrome
Take a moment to imagine a doctor sharing such devastating news about someone you love.
Now, envision a day dedicated to raising awareness about the difficult path to diagnosis. How uplifting it would feel to have people support you, simply by sharing your story or wearing blue or purple on May 15 for International MPS Awareness Day.
My son has MPS type II, known as Hunter syndrome. Initially, we believed it only affected boys, yet the first person we met with the syndrome was a girl. Approximately 2,000 families worldwide are living with Hunter syndrome, and it transcends religion, geography, and gender. Awareness is crucial—particularly in the medical community—and among the general public. There are seven types of MPS.
My son receives a manmade version of his missing enzyme weekly; while it isn’t a cure, it does slow the progression of his condition. It allows us time—time to hope for a cure and for future treatments approved by the FDA.
So, I ask you to imagine. Imagine the awareness and support you could show by wearing blue (in Ireland and the UK) or purple (in the United States and elsewhere) on May 15. The world has shown solidarity for various causes; imagine if it united for children battling MPS. Share your photos wearing these colors on my Facebook page, “It’s Me Ethan,” or tweet them to me @ItsMe__Ethan to help raise awareness. Together, we can turn the world purple and blue!
Thank you for your support.
Alex Thompson