A Special Day for Raising Hunter Syndrome Awareness

Every week, my son’s principal sends a voicemail to parents highlighting the week’s news and activities. At the end of the message, she signs off with a reminder to “Be kind, be thoughtful, you never know what someone else is going through.”

I try to remember her advice when everyday annoyances or stressors leave me feeling overwhelmed. So when I hear about someone who is going through something serious but still manages to find time to think of others, it impresses me all the more.

And few people have impressed me as much recently as Monique Whitaker and her nine-year-old son Michael. Michael is one of a handful of children in the United States to be diagnosed with Hunter syndrome.

Like all children with Hunter syndrome, the challenges he faces seem overwhelming: Developmental disabilities have left him on the mental level of a four-year-old, and scoliosis limits how much he can walk on his own.

His mother, though, looks beyond those challenges to count her blessings: He’s more mobile than most children with Hunter syndrome, and can run and play for short distances. He can talk, ride his special bike, and pick out his own clothes. And most critically, his pediatrician diagnosed Michael early on—at 17 months.

For a progressive disease like Hunter syndrome, that early diagnosis is critical to starting treatment and delaying progression.

Even though Monique faces a long and difficult journey ahead, Michael has outlived his initial five-year prognosis, and with support from her large church family, she’s been able to juggle working full-time with Michael’s complex medical needs. So Monique decided to give some of her blessings back to the community.

This past October, she held the inaugural “The Praise… With Michael” Day. This special awareness day was open to any families with special needs children, and sought to educate the community about those special needs and the issues those families face. With the help of her church family, corporate partners, and local facilities that work with children like Michael, Monique drew a large and enthusiastic crowd.

Monique is hoping to make the event an annual affair, and she would love to see Hunters screening made mandatory at birth. Until then, Monique and Michael are showing that no matter what you’re going through, you can always find room in your heart to think of others.

Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email