Our journey started in 2015 when our daughter, Elizabeth, was diagnosed with mild to moderate bilateral sensorial hearing loss. We pursued genetic testing to identify the source and learned that our 5-year-old was among the 3% to 6% of hearing-impaired children living with Usher Syndrome Type 2A, a genetic disorder that causes hearing loss at birth and can lead to gradual vision loss through the development of Retinitis Pigmentosa (RP). It can effect vision as early as adolescence, degrading first a person’s night vision and then tunnel vision. In some cases, RP can lead to full blindness but does not always.
Advancements in research continue to shine a light on Usher’s otherwise bleak landscape, but until there is a cure we pray for the best but plan for the worst. We immediately made fundamental changes for our family in an attempt to cram as many visual memories into “Lizzy’s” little eyes as we can, in hopes that some of them will last a lifetime. Thus, the “visual bucket list” was born. It is a compilation of all of the sights we want Lizzy to experience prior to losing any of her vision. Some of them turned out a bit grandiose (see the Grand Canyon, go on a real fossil dig, watch a show on Broadway), but most of them were simple pleasures we could repeatedly enjoy from our own backyard (catch fireflies, find rainbows, roast S’mores over a bonfire, view the stars and count the colors in both sunrises and sunsets). They’re the memories we hope will color Lizzy’s mind if the day comes when her vision goes dark.
Since our journey began, many friends, strangers, and communities have poured so much love and generosity into making our dreams for Lizzy come true. In that spirit, we created The Visual Bucket List Foundation to “Pay It Forward” and allow other children affected by similar vision limitations the chance to experience something on their own “visual bucket list,” with all the grandiosity and individualization we can muster. Our goal is to make the experience as memorable as we can; a vision they can keep for a lifetime.