'Visual Bucket List': Girl With Usher Syndrome Is Slowly Going Blind, So Parents Created List Of Things They Want Her To See
People take sight for granted. It allows us to see the world, watch TV, read a book, or spy on distant galaxies. Imagine if you were on the verge of losing your sight. What would be on your bucket list of things to see before the world went black? For one 5-year-old girl, that bucket list has become an unfortunate necessity.
Elizabeth “Lizzy” Myers has Usher syndrome type 2, a rare genetic disorder characterized by hearing and progressive vision loss that can result in blindness. She has about five to seven years until she loses nearly all of her vision, so her parents decided to take her out and see the world. They started by bringing her to the local sights of her hometown, Bellville, Ohio. But once her story was run in the Mansfield News Journal, people started pitching in to help Lizzy and her family take their visual bucket list on the road. Up next, they want to stop and watch the waterfalls at Niagara Falls, see the splendor of the Grand Canyon, stare up in awe at the Northern Lights, and countdown at Old Faithful in Yellowstone Park.
After hearing her story and having it touch his heart, the general manager of Turkish Airlines made the Myers family an offer they couldn’t refuse: free, round-trip tickets to any location in the world. That way, Lizzy could see the grandeur of the planet before the vision loss takes over. The Myers family decided on going to Italy because they didn’t want to pass up on going to a place they otherwise wouldn’t have been able to.
Lizzy doesn’t know about the Usher syndrome that is going to rob her of her sight, as her parents have decided it’s best not to tell her yet.
Ongoing research is being conducted at Boston’s Children’s Hospital in Massachusetts, which may be able to help Lizzy down the road. She might even participate in a study that could shed some light on this rare disease. The Usher Syndrome Coalition, whose goal is to help raise awareness and accelerate research for the most common cause of blindness and deafness, also provides support for families that are affected by the disease.
Unfortunately, there is no cure yet for Usher syndrome type 2, but that isn’t affecting Lizzy or her family. They’re staying in the present and celebrating the sight that Lizzy still has and, slowly but surely, checking off the things on the bucket list.