Gabe’s story: Life with a rare genetic disorder

by: Emily Linnert  Updated: Jan 10, 2019 / 11:40 PM EST

Gabe’s Videos | M Live Article | News Channel 8 Article | Gabe’s Slideshow

HUDSONVILLE, Mich. (WOOD) — As they care for their 4-year-old son, who has a genetic disorder so rare that it doesn’t even have a name, a West Michigan family is finding ways to bring the world to him.

“He’s the love of my life. We just adore him,” Gabriel Dehen’s father David Dehen said.

Gabe’s case is among fewer than 25 instances of the disorder ever being recorded anywhere in the world. Caused by an abnormality in what’s called the PIGA gene, the terminal illness keeps Gabe from speaking or even moving, and continues to cause his brain and brain stem to degenerate.

“Gabriel means ‘God is my strength.’ And if anyone needs it, it’s these children that go through this kind of thing. And he is a strong boy,” David Dehen said.

Dr. Seth DeVries, a pediatric neurologist at Helen DeVos Children’s Hospital in Grand Rapids, was with Gabe not long after his birth, and when the Dehens started getting hints that Gabe was not the healthy baby they had been expecting.

“It’s amazing to see kind of where he is today versus where he was 4 years ago with what’s going on,” DeVries said.

Inside the Dehens’ home in Hudsonville, the family room looks a lot like a hospital room. It has to. That’s life with Gabe.

“Everything about him is still exciting to me in spite of all this,” Dehen said.

In the front yard of their home is a red maple they call Gabe’s Tree. It was given to them by Gabe’s grandfather in honor of his birth.

Now, friends, family and loved ones bring dirt, sand and rocks from all over the world to Gabe’s Tree. David Dehen keeps a book tracking where they are from: Israel and Greece, and even pieces of the Great Wall of China.

“These nutrients become a part of this tree’s life and that’s the thing. I want Gabriel’s life to touch the world, and I want the world to touch his life,” David Dehen said.

The challenges for the family are many. Among them is dealing with trips back and forth from their home to the children’s hospital, where Gabe sees several specialists. The Dehens’ Pontiac Vibe barely holds all the equipment Gabe needs, and lifting their growing boy is beginning to weigh on his mother Christina’s tiny frame: she’s only 4-foot-11.

Gabe’s parents know only a miracle could cure him.

“My actual heart of hearts is that I ask that God would heal my son and that he could go to wherever this dirt comes and tell the world what God has done for him. I may only have him for short period, but every day is so precious,” David Dehen said.

Gabe’s Videos | M Live Article | News Channel 8 Article | Gabe’s Slideshow