HOLLAND, Mich. — For kids and adults of all ages, a trip to Disney World is the trip of a lifetime, but for one little girl from Holland with a rare bone disease, she says this trip would be the best gift she could imagine before her world changes forever.
And now she's asking for the community's help to make that happen.
"I think God knew when he was making her that this was going to be part of her life," said mom Stacie Maxwell, "to make her stronger and build her character and make her really stand out from the crowd."
11-year-old Alainah Ortiz is just like any other little girl. Except that she's one of only 50,000 people in the world living with a rare bone disease called Osteogenesis imperfecta. It causes her to have brittle bones and spinal issues.
Alainah has had 47 fractures all over her body since she was born. She also has scoliosis and von Willebrand's disease.
"It's really hard," said Stacie. "I'd give anything to take it away from her, but all I can do is help her and make the best decisions that we can."
As Alainah has grown, the curvature in her spine has worsened.
She currently has a 60° curvature in the upper part of her spine that she needs surgery to correct. Doctors say she needs the surgery now before she grows anymore.
It is a spinal fusion surgery to fuse parts of her spine together with metal rods to stop the curve, and it's been scheduled for June 14.
"I'm actually very scared of having it because I don't know what's really going to happen," said Alainah.
Stacie said the surgery will be with her little girl forever, and will cause her to lose all mobility in her back.
"It's a lifetime," Stacie said.
Little Alainah is making the best of it, though. "I'm gonna be Ironwoman!" she said.
But even with a smile as big as hers and an outlook as positive as it gets, it is still scary for Alainah to think about having such a major surgery.
So her mom had an idea. She wants to take Alainah to Disney World before her surgery.
"It's time for her just to be a kid," she said. "To just let loose, see the princesses, go swimming and do all of the things she's not going to be able to do for quite some time."
It's a trip that the spunky 11-year-old said would be a dream come true.
"This would be my last time doing something before I go into surgery," Alainah said.
The family has set up a GoFundMe page to help pay for the trip, and Stacie says no one is more deserving of the help than Alainah, who's gone through so much and still has quite the journey ahead of her.
Alainah got emotional as she said how much it would mean to her to have the community's support for both her trip and her surgery.
"It would be awesome. It would just be great," she said. "Thank you."
To help send Alainah to Disney World, you can donate by clicking on this link.
And for more information on Osteogenesis imperfecta, click here.
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