I invite you to join me on a thought-provoking journey. If you are a parent, relative, friend, teacher, healthcare professional, or anyone who cares, this journey is for you. It’s a difficult path that many families must navigate.
Picture this: You are handed a beautiful newborn—perhaps your child, a niece, or a friend’s little one. Imagine watching that sweet child grow into a lively toddler, full of questions and bursting with energy. Now, envision waking up one morning to find that same child sitting quietly in a corner, tears streaming down their face without any clear reason. You suspect they might be coming down with something, and a visit to the pediatrician confirms your fears: just another ear infection, the tenth one since they were born.
“It’s common in children at this age,” the doctor reassures you.
However, this ear infection spirals into a chest infection, sending you back to the doctor. “Just a rough patch; he’ll be fine,” they say.
You find yourself staring at your child, pondering where their unique features come from—those striking eyes, those big hands, and that round little belly. Something feels off, but you struggle to articulate it to the doctor. You try your best.
“I think he might have hearing loss; he’s not engaging with us or his toys, and… I know this sounds odd, but he doesn’t resemble either of us,” you express, feeling a mix of frustration and fear.
“Let’s test his hearing. Worst-case scenario, he needs tubes. Many kids do, and they usually outgrow it,” the doctor replies.
Even as you push for answers, you sense that your instincts are being dismissed. You finally receive occupational and speech therapy services for your child, who indeed has hearing impairment. Specialists assure you that he will eventually catch up. But you’re not convinced. Something deeper feels wrong.
Imagine watching your four-year-old struggle to do what he could easily accomplish at 18 months. His speech is fading, and the therapists continue to chalk it up to the hearing loss. “He’ll learn once he gets his hearing aids,” they say, but you’re not seeing the progress.
As the years go by, you sit in countless appointments—conversations filled with uncertainty and doubt. Fast forward to a hospital visit when your little one is nearing six years old, about to undergo surgery for yet another set of tubes. You can feel your heart racing, filled with dread.
“No more tubes! They’re not working!” you exclaim in frustration.
“Let’s calm down and discuss this after the procedure,” the doctor replies.
But you refuse to back down. After insisting on seeing a new specialist, a doctor finally listens to your concerns, including your “silly” worries about your child’s unusual physical features. “You’re right to be concerned; this is not just a hearing issue,” they affirm.
Three weeks later, as you sit with this compassionate doctor, the weight of the world crashes down as you hear the words:
- Genetic
- Rare
- Metabolic
- Mucopolysaccharidosis
- Progressive
- Life-limiting
- Terminal
- No cure
- Hunter Syndrome
Take a moment to imagine hearing that about someone you love.
Now, think about how wonderful it would be to have a day dedicated to sharing your story and raising awareness about this journey. May 15 is International MPS Awareness Day. This is our chance to encourage others to understand the struggles faced by families like mine.
My son has MPS type II, known as Hunter syndrome. Contrary to what many think, it can affect anyone—regardless of sex or background. There are around 2,000 families worldwide facing this condition. Awareness is crucial, especially within the medical community, and there are seven types of MPS.
Each week, my son receives a synthetic version of the enzyme he lacks, which slows the progression of his condition, giving us hope for future treatments as they become available.
So, I invite you to imagine the impact you could make by wearing blue in the UK and Ireland or purple in the US on May 15 to honor those affected by MPS. Picture a world that turns purple not just for celebrities or events, but for children fighting to live. You can share your support by posting pictures on social media or tagging me to help raise awareness.
Thank you for taking the time to read our story. Together, we can make a difference.
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