In pictures, Quinn Schiro looks like happy, healthy baby girl.
One by one – picture after picture – her blue eyes will leave you smiling. But at this time in their lives, Colleen and Jeff Schiro – Quinn's parents – struggle to smile.
That's because they are living with a nightmarish reality: Quinn will likely die, and they don't have much time left.
Today is National Rare Disease Day, and Colleen and Jeff are one of many parents out there struggling. Quinn was diagnosed with Pontocerebellar Hypoplasia (PHC) last month.
There is no cure. The only hope Colleen and Jeff have is in prayer – and the prayers of many others who are rallying around baby Quinn.
They've started a Facebook page called "Quinn's Bucket List," hoping to share their daughter's life with others, as well as the many fun things they hope to accomplish with her while she's still on this earth.
Quinn was born May 6. Three days later, the Schiro's went home a family of three. They were so happy.
But quickly, mom and dad realized something was wrong.
By two months old, they had already seen multiple doctors because of an eating problem. Then they went to a specialist. They could give no explanation as to what was wrong.
So they saw another specialist. Nothing.
Every test came back saying she was a normal girl. She was quickly becoming "the mystery patient."
Finally, in September, doctors performed something called Whole Exome Sequencing; it's the most extensive test they could offer.
The Schiro's finally had an answer – and it devastated them.
On Jan. 27, baby Quinn was diagnosed with PCH, a highly rare brain disease that affects development.
Children with it do not live past early childhood.
Their baby girl was slipping away.
A Bucket List
For healing and for Quinn, Colleen and Jeff have turned to Facebook. "Quinn's Bucket List" already has more than 1,000 likes, and it's quickly growing.
By the thousands, people are praying – hoping for a miracle. But the Schiro's have accepted the reality that they'll lose their daughter.
Now, they're hoping to enjoy the time with her. On the page, they share the fun experiences they have with Quinn.
Most recently, they took her to the Gasparilla Race in Tampa. They've been horse riding. They went to a firehouse, and even got a visit from some Tampa Bay Buccaneers.
It's the small things now that matter most.
They want more ideas, and they want to raise awareness for PCH.
You can find more information on Rare Disease Day at http://www.rarediseaseday.org/
You can visit their Facebook page here: https://www.facebook.com/QuinnSchiro?ref=ts&fref=ts
WJBK-TV | Fox 2
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