Steve Myers and his wife are creating a visual bucket list
for their daughter. Lizzy, age 5, has Usher Syndrome Type 2, a genetic disorder
that causes partial hearing loss and progressive blindness.
Once Lizzy reaches adolescence, she is expected to lose night
vision first and then experience tunnel vision. She was diagnosed with Usher
Syndrome after her parents got her help for her speech problems.
"If we had not done that, then this would have been hitting
us in the face. She would have been losing her night vision, and who knows how
bad before we even knew it was happening," Myers told Today.com.
Lizzy's sight is fine for now, so her parents are taking her
to see as many sights as they can, like Niagara Falls and the Grand Canyon.
They took a trip to an observatory at night to see the stars, and they want to
take her on a fossil dig in the Dakota states. Lizzy is "a bit of a rock
"She's five, so aside from Tinkerbell and 'The Little
Mermaid,' there's not a whole lot of suggestions she has of what she wanted to
see," Myers told Today.com.
Myers and his wife are waiting as long as possible before
telling Lizzy. They don't want her to have to worry, especially if there is
good news down the line.
"We are hoping and praying for a cure to this," Myers told
In the meantime, they are packing her life with as many
memories as they can manage. If she does lose her vision, they want her to be
able to remember countless activities and trips from her past.
"I hope she will think back and remember catching lightning
bugs with her dad and her little sister. And she seems to like the stars and
the moon, so I think that's going to be a big part of her memories, too," Myers