The holidays are here.
For most, that means homes filled with joy and laughter.
But the outlook for children with terminal illness is much different.
For many, Christmas will be spent at the hospital instead of home.
A McKinney woman is on a mission to make it memorable.
Shelley Simon is collecting Legos for medically fragile and terminally ill children in the ICU over the holidays.
“I know those kids are the ones that get left out,” she said.
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Simon started a non-profit called Hope’s Seed because she says she didn’t want people to feel alone.
Simon’s daughter Zoe was diagnosed with a rare disorder at birth called congenital central hypoventilation syndrome, or CCHS.
It causes shallow breathing, especially during sleep.
It makes what should be the most peaceful time of day stressful.
If Zoe doesn’t use a mask and breathing machine every night, she won’t survive.
“Every single night, death is knocking at our door. We don't know if we're going to make it through the night,” Simon said.
It’s hard to believe for someone who has so much life.
By day, Zoe is an energetic 16 year old, doing homework and playing video games.
By night, she’s fighting for her life.
“Just stay in the moment and live in the present,” Zoe said. “That's all that matters.”
Their personal struggle inspires their public mission to collect 700 boxes of Legos by Christmas.
“That’s my pipe dream,” Simon said.
It’s a dream building momentum one block at a time.
Simon plans to give the Legos to Children's Medical Center of Dallas and Plano.
She says she chose Legos because the hospitals said they are so popular among patients they can’t keep them in stock.
Anyone interested in donating can contact Simon at ShelleyColquitt@hopesseed.com.