Parents have 'visual bucket list' for 5-year-old with rare genet - Cleveland 19 News Cleveland, OH

Parents have 'visual bucket list' for 5-year-old with rare genetic disorder

Lizzy is living out her "visual bucket list" (Source: WOIO) Lizzy is living out her "visual bucket list" (Source: WOIO)
CLEVELAND, OH (WOIO) -

Lizzy Meyers is pretty much your typical five-year-old girl.

"The most wonderful thing about Lizzy is probably her need to learn," said Steve Myers, Lizzy’s dad.

"Very inquisitive, a sponge. She wants to learn everything," described Lizzy's mother, Christine Myers.

Like any other parents, Lizzy's mom and dad want their daughter to see and experience the world. But for them, the clock seems to be ticking a lot faster.

Lizzy doesn't know it, but she has a rare genetic disorder called Usher Syndrome Type II.

She has mild to moderate hearing loss and the prognosis is that she will eventually lose her sight.

"Once she starts that process in adolescence, there is no telling how fast it will progress," said Steve Myers.

So Lizzy's parents made up their mind that they would make the most of the vision she has now.

They've created a "visual bucket list."

Sunday, they brought her to the Cleveland Museum of Natural History.

"Lizzy loves fossils, so we spent time up near Toledo, where they have a fossil park, and she will actually sit with a rock in her lap with dental picks and pick out little fossils," Steve said.

Lizzy's parents decided that, for the moment, they will not tell her about her prognosis.

"She's five - I mean - how do you tell a five-year-old? Even if I told her, I don't think she'd understand. We don't see a point in having her worry and disrupt her childhood," Christine said.

At some point, Lizzy’s parents know that that talk will be in their future.

In the meantime, they have a trip scheduled for Rome next year and a whole lot of things in between now and then.

"Our focus is actually on those low light things we can do like star gazing, lightening bugs, campfires - lots of s'mores!".

The Myers are hoping that there may be a cure before Lizzy's vision declines.

Until then, the whole family is seeing the world, and life, in a whole new way.

"Our life has gotten fast-paced because we are trying to fit everything in, but at the same time, it has slowed us down in the other areas because it helped us prioritize what is important," Christine said.

You can follow Lizzy Myers visual bucket list on Twitter by using #Lizzysvisualjourney

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