CALDWELL, Idaho — Sophia Bartley is 10 years old, and she is a 5th grader at Lewis and Clark Elementary school in Caldwell.
"You walk into the school and everybody is like hi Sophia, hi Sophia," Sophia's mom Katie Bartley said. "I don't even know half of these people. It's incredibly heartwarming to see."
"Everywhere I go, people say hi," Sophia said. "I love my friends."
She has a rare debilitating genetic disorder called (AT) Ataxia Telangiectasia, that impacts just about every aspect of her life. However, despite that, she is at school each day with a smile.
"Oh, Sophia is just the best," said Nancy McCracken, Sophia's Speech Language Pathologist. "Everyone loves her, everyone knows her."
Sophia said loves school and there is no place she would rather be, no matter how she is feeling.
"I just keep pushing and pushing through the day," Sophia said.
Lewis and Clark Principal Dr. Matt McDaniel said there is just something really special about this 5th grader.
"She is a special kid no doubt, and maybe her special qualities make her like a magnet that people want to be around and hang out and support," McDaniel said. "Sophia is a light in our school."
Sophia was diagnosed with AT when she was just two years old.
"So, she has a condition called Ataxia Telangiectasia, it's basically the combination of cerebral palsy, cystic fibrosis, muscular dystrophy and Parkinson's. A lot of people compare it to ALS, a childhood version of ALS," said Bartley.
Her parents started a Facebook page for her called Sophia's Strength, where they share her life, in hopes of helping other families like theirs.
"We just decided we needed a platform for awareness," Bartley said. "There is currently no treatment, and no cure."
The Bartleys said they don't know what the future holds for their daughter, and that is the hardest part. But, over the years, Sophia has thrived.
"She did six years of dance, she did swimming, she's been independent walking, up until this past year," Bartley said. "She couldn't walk through a store anymore by herself, a day at school was debilitating and she couldn't make it through a day without being exhausted. In the last year, we just really started to see the decline of the disease. It's been really hard."
Sophia now uses her wheelchair most of the time, and she is also now struggling more with her speech.
"We used to be able to understand 90 percent of what she says, now it's down to 50 or 60 percent," Bartley said.
At Lewis and Clark Elementary, her Speech Language Pathologist Nancy McCracken is working on that.
"We moved to work with a device that helps communicate for her, if she is too tired or too exhausted to use her words," McCracken said. "She can add whatever she wants to it so that everyone can know about her, what she likes, what she doesn't like. It's really helpful for her."
Her mom said her biggest support system has been the wonderful people in this school.
"It's been amazing, the kids here saw her being able to walk, be on the playground, to then being in a wheelchair. It was no big deal to them. They embraced it and they fought over who was going to push her in her wheelchair." Bartley said. "Thank you, thank for embracing her and thank you for helping her to feel normal as she can when she's here. That's what we want, that's what she wants. She wants to be a normal ten-year-old 5th grader."
Little does Sophia know, she is inspiring everyone along the way. That includes the Idaho Steelheads. She's a huge fan, and the team and the coaching staff are big fans of hers too. She goes to as many games as she can.
"I love hockey," Sophia said. "The players are so nice."
Something big happened over the last week.
Sophia and her parents took part the Disney World 5k in Florida to raise money to one day find a cure for AT. The most powerful part was that she walked across the finish line with her mom and dad.
Sophia takes on each day with determination. Her mom said she is constantly blown away by her positive attitude.
"This is a hard life, she struggles to get out of bed, she struggles to walk. But, she never gives up. She keeps growing and pushing with a smile, she does everything with a smile on her face," Bartley said. "She inspires me so much. Everybody looks different on the outside but we all have the same beating heart, and she will tell you that. That everybody's different but we are all the same on the inside."
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