El Dorado County boy "Shines" through adversity, pursues Paralympic dreams on prosthetic legs
EL DORADO COUNTY -- At just six years old, Shine Arslanian of Garden Valley has faced more adversity than most, but still, nothing slows him down.
"I am inspired by Shine on a daily basis. He continues to blow my mind," said Shine's mother, Jamie Duby.
Every day brings a new challenge, but Shine was born a fighter.
Duby had no idea of her baby's diagnosis until the day he was born, Sept. 16, 2017. Shine was immediately rushed into emergency surgery at UC Davis Children's Hospital.
"It was devastating. I didn't know if he was in pain, I didn't know if he would even make it past three weeks," said Duby.
Shine spent three weeks in the UC Davis NICU and was diagnosed with a combination of two extremely rare genetic conditions, Popliteal Pterygium Syndrome (PPS), Bartsocas-Papas type, and Ectodermal Dysplasia.
"The particular type that Shine has is probably one in a million," said Dr. Suma Shankar, chief of genomic medicine at UC Davis Health.
Shankar was there the day Shine was born, called in due to the noticeable genetic abnormalities after his birth.
He only had one finger on each hand, his legs were webbed, his knees could not extend and he had a cleft pallet. Shine was also unable to open his jaw and was breathing through a hole in the roof of his mouth when he was born.
"You would describe him as a kid who has beat the odds?" asked reporter Ashley Sharp.
"Absolutely," said Shankar. "He absolutely beat the odds."
Shine at just six years old has undergone 17 surgeries, with more to come. Duby says the care their family has received at UC Davis Children's Hospital has made all the difference.
"They listen, they take me seriously. I walk in there and I have loads of questions every time and they always are patient and answer every question I have," said Duby.
Due to his legs being webbed together at birth, they were amputated to give Shine the ability to walk with prosthetics.
"He is so determined. He doesn't ever look at a challenge like 'I can't do this,'" said Duby.
But Shine doesn't only walk on two prosthetic legs; he runs.
Since he was first strapped into his first pair of running blades, Duby says Shine has quite literally never stopped running.
"He just took off, and that was it," said Duby.
It's a passion symbolic of Shine's short life so far: a marathon, not a sprint.
Shine may have lost both of his legs to his condition but gained, instead, a will to cross any finish line before him.
"Look, you can do anything that you want. You don't have to let your disabilities hold you back," said Duby.
Shine hopes one day to be a Paralympic athlete, competing in triathlons.
He runs every single day, even the mile it takes to get home from the bus stop.
"He'll have me time him in the driveway, running down the driveway and he always tries to beat his time," said Duby.
Shine has also learned how to swim, surf, fence, play lacrosse and hand cycle. He has been involved for the past two years with the Challenged Athletes Foundation.
He's a child who beams with his own ray of sunshine and lets nothing hold him back.
"I believe it's the perfect name for him. He really does Shine," said Duby.
What also shines through Shine is a willingness to educate others about his rare conditions.
Duby recalled a proud mom moment when Shine asked to speak in front of his class at school, allowing the children to ask him questions and passing around his prosthetic legs to get a closer look.
"It really made me just so proud. He is six years old and already advocating for himself,' she said. "That is really powerful because that's going to be something he has to do the rest of his life."
Everyone can learn something from Shin: we aren't so different after all. Differences lie in all of us, but they don't define us.
Duby says if she could speak one message to every parent, it's not to "shush" and shut down a child who asks in public about another child's condition.
"That really teaches isolation. The proper way to respond in those situations is to say, 'Why don't we go meet him, you know?'" she said.
Dr. Shankar says it is important to Shine a spotlight on these rare genetic conditions.
"More awareness is one thing, education, acceptance," said Shankar. "These genetic conditions are so rare, the pharma companies sometimes are not interested in developing treatments, and for the ones that the treatment is available, they are so expensive. There is hope ahead, even in just thinking about how far we have come in the past 10-15 years."
Shine also receives care at Shriner's Hospital for Children in Sacramento, where he will soon be fitted for new legs.
"We're going on pair seven. Tomorrow, we get his next pair," Duby said Monday.
Shine just keeps growing and running through life and legs with a smile.
"I feel like he chose me to be his mom, and I'm going to do the best I can to make sure he can thrive — that he can Shine," said Duby.
