When Jamie Duby dreamed about her unborn baby during pregnancy, she saw a tiny boy with one finger on each hand — and called him “Shine.”

Months later, that dream became reality.

Shine Arslanian was born five weeks early on September 16, weighing just 4.5 pounds. He had one finger on each hand, along with a number of serious complications that doctors had not detected before birth.

Within hours, the newborn was transferred to UC Davis Children’s Hospital, where doctors discovered that his jaw and eyes could not open properly, his knees could not fully extend, and several of his fingers and toes were joined together.

After genetic testing, Shine was diagnosed with Popliteal Pterygium Syndrome, Bartsocas-Papas type, an extremely rare condition linked to changes in the RIPK4 gene.

For Jamie and Shine’s father, Adam Arslanian, the diagnosis was overwhelming.

“We had no idea he was going to be born this way,” Jamie recalled. “We were scared because we didn’t know what the future would look like. But the team at UC Davis stood beside us from the very beginning.”

Shine spent three weeks in the NICU and underwent several procedures, including a tracheotomy, feeding tube placement and surgeries to repair his palate.

Doctors had initially prepared the family for a much longer hospital stay, but their tiny son surprised everyone by going home after just 21 days.

Yet his medical journey was far from over.

Shine was later diagnosed with ectodermal dysplasia, another rare condition that can affect the skin, teeth, hair, nails, hearing and vision. Over the next three years, he underwent more procedures, eventually reaching 17 surgeries, 14 of them at UC Davis.

One of the biggest decisions came when Shine was two years old.

Doctors and his parents faced a difficult choice: he could remain dependent on a wheelchair, or undergo surgery to give him the possibility of running, jumping and becoming more independent.

Jamie chose to give her son that opportunity.

After his legs healed and he was fitted with prosthetics, Shine surprised everyone.

“He put his legs on and just took off,” Jamie said. “He wanted to move. He wanted to run.”

Three years later, the little boy has turned that determination into a passion.

Now six, Shine has already completed six 5Ks and three mini triathlons. He has received running blades and dreams of becoming a triathlete — and one day competing in the Paralympics.

“Mom, I want to run. I want to run,” he tells Jamie, who sometimes times him as he races down the driveway trying to beat his previous record.

“He told me he’s going to the Paralympics,” Jamie said. “It’s completely his dream. Nobody is pushing him. He wakes up wanting to train.”

Shine has also learned to use his experiences to help others understand him. When classmates began asking questions about his prosthetic legs, he suggested bringing books to school and talking openly about his condition.

He even removed his prosthetic legs and allowed his classmates to look at them.

“He did that all by himself,” Jamie said proudly. “He wants people to understand that he can do the same things they do.”

Away from running, Shine enjoys gymnastics, T-ball, surfing, fencing and even breakdancing. His mother says he refuses to let his medical history define what he can become.

“He is such a happy child,” Jamie said. “I wouldn’t change him for the world. I know in my heart that he was meant to be exactly who he is.”

After 17 surgeries and years of hospital visits, Shine has become a familiar face to the medical team that helped him through his earliest days.

His family says UC Davis feels like a second home.

“They feel like family to us,” Jamie said. “Shine wouldn’t be where he is without them. From the beginning, they made us feel that he was truly cared for.”

And today, the little boy once surrounded by hospital machines is running, laughing and chasing dreams on his prosthetic legs.

For Jamie, the meaning behind that pregnancy dream has never been clearer.

“Shine is showing everyone that nothing has to hold him back,” she said.

Source: health.ucdavis.edu