With Moebius Syndrome Awareness Day coming up, there are lots of new pieces coming out, and to everyone who is working hard to raise awareness, and to get your story or your family member's story in the news, we all say--great job! There are many stories to choose from. I thought that just maybe many of you had not seen this one yet--it's about the Barron family, in Wisconsin, and their wonderful son, Wilhelm. Read all about it:
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Eye drops, eye drops, eye drops.
Throughout every single day Danielle Barron of Oshkosh puts them in her son Wilhelm’s eyes, and every night she puts ointment on them.
The eye drops are everywhere — in her purse, in the car, in the living room, bedroom and even in her coat pocket. The Barrons don’t go anywhere without eye drops for 4-year-old Wilhelm, donned Willie for short.
Willie was born with Moebius Syndrome, a rare disease that affects an estimated 2 to 20 babies per million, according to the Many Faces of Moebius Syndrome website. Fewer than 10 people in Wisconsin have it.
When Willie was born, the left half of his face was normal and the right side paralyzed. He has half a smile on the left, though if he’s really laughing the right corner of his mouth and eyebrow twitch.
He has 10 teeth, and cannot blink, squint or move his eyes to the left or right. He also was born with strabismus, or crossed eyes, and with clubbed feet, but has had surgeries to correct those conditions.
Willie was later diagnosed with Poland Syndrome, which oftentimes goes hand-in-hand with Moebius. He’s missing pectoral muscles and has deformed ribs, which causes an indentation in his chest.
Moebius Syndrome brings constant challenges, but the family’s optimism, reluctance to be held back and love for Willie keeps them looking forward to each new day.
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And the above is only part of the story.
Go to the story link above and read the whole thing. You'll be glad you did...
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