Imagine embarking on an emotional journey with me. Whether you’re a parent, relative, educator, healthcare professional, or friend, I invite you to join me on this poignant exploration. It’s a path that many families must navigate, filled with challenges and uncertainty.
Picture this: a beautiful newborn is placed in your arms. Whether this child is your own, a family member, or a close friend, they quickly become a source of joy. Envision watching this little one grow into a spirited toddler, bursting with energy and endless questions. But one day, you find them sitting alone, tears streaming down their face, and you can’t fathom why. They seem to be unwell, and your intuition tells you something is off.
A visit to your general practitioner confirms your suspicion of an ear infection—just another bout in a long line of similar issues since their birth. “It’s common for children this age,” the doctor assures you. Yet, the ear infection evolves into a chest infection, leading you back to the doctor. “Just a rough patch—he’ll be alright,” they respond, but doubt lingers in your mind.
As you observe your child, you can’t help but question their development. Those striking eyes, those hands, the round belly—everything feels slightly amiss. You express your concerns, saying, “I worry he might have hearing loss. He seems distant and no longer engages with his toys, and honestly, he doesn’t resemble either of us.”
“Let’s test his hearing; worst-case scenario, he might need ear tubes. Many kids go through this and eventually outgrow it,” the doctor reassures you, but you remain unconvinced. Despite receiving occupational and speech therapies, your intuition tells you that hearing loss isn’t the complete answer. Your child, once so lively, now struggles with simple tasks.
As time passes, you notice further declines in their speech. Specialists attribute this to hearing impairment, suggesting that with hearing aids, things will improve. But you can’t shake the feeling that something more is at play. Your child, who was once so quick to learn, now seems to have forgotten it all.
After years of consultations and countless hospital visits, imagine finding yourself in a surgical ward, heart racing, as your child prepares for yet another procedure. The doctor insists on placing more tubes despite prior assurances that the maximum would be three. Frustration boils over, and you demand an alternative—someone who will truly listen.
Then, a breakthrough occurs. You meet a compassionate doctor who takes your concerns seriously, even those that seem trivial. This doctor acknowledges that your child’s issues extend beyond mere hearing impairment and commits to finding answers together.
Fast forward three weeks, and you sit in the doctor’s office, your heart racing as you hear the diagnosis: Genetic. Rare. Mucopolysaccharidosis. Progressive. Life-limiting. Terminal. Hunter Syndrome.
Now, take a moment to imagine receiving such news about someone you love. Each year, there is a day dedicated to raising awareness about the journey toward diagnosis. On May 15, International MPS Awareness Day, your heart swells with hope as you see others supporting the cause by wearing blue or purple.
My son has MPS type II, known as Hunter syndrome. We were initially told that only boys were affected, yet our first encounter with someone living with Hunter syndrome was a girl. Approximately 2,000 families worldwide are navigating this condition, which does not discriminate by gender, religion, or region.
Awareness, particularly in the medical field, is crucial. There are multiple types of MPS, and ongoing research is vital for finding treatments. My son receives a synthetic version of the enzyme he lacks, which, while not a cure, helps slow the progression of his condition. This gives us precious time to hope for future breakthroughs.
So, I urge you to visualize the impact of awareness and solidarity. Imagine wearing blue or purple on May 15 to honor those affected by MPS. The world can unite in support of children facing these challenges. Share your pictures wearing these colors on social media or visit my Facebook page at It’s Me Ethan or tweet them to @ItsMe__Ethan.
Together, we can shine a light on Hunter syndrome and the families living with it, fostering understanding and hope for a brighter future.