Family Learning to be Caregivers to Son with First Known Case of NANS Deficiency

October 22, 2015

When you enter the Mission home of Darlene Schopman and Frank Jutten, the first thing that strikes you is how alive the house feels.

The smell of fresh coffee fills the air, original art hangs on the walls, and the sound of a child’s laughter echoes throughout the place. The house practically radiates love. You’d never guess the family is struggling with a health situation that would break most people.

Schopman and Jutten’s three-year-old son, Nolin, suffers from NANS deficiency, a devastating disease that has left him stricken with seizures and unable to walk, sit, talk or even hold up his head. He’s dependent upon his parents and other caregivers for everything.

Like other boys of his age, though, Nolin is full of joy and wonder. He loves being around other children, and when The Province visited his home he spent most of the time laughing with delight at having guests. He was even able to interact a little bit with special learning apps on an iPad.

The situation has completely changed the lives of his parents. They’ve been forced to deal with constant crises, such as having to give Nolin CPR on the side of the road when he stopped breathing during one of his many seizures. It’s even affected their careers.

Schopman worked as an architect and interior designer before the couple had Nolin — and she was also an artist on the side. But she’s had to cobble together a living working from home since Nolin was born.

“We have so many doctor’s appointments where I have to be there,” Schopman said. “I have to be there with all the therapists.”

Read more at the source

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