Heroic acts in the face of unbelievable loss

Patricia A. Miller
Ocean View

For the past several years, Michelle and Michael Fox fought two valiant battles they knew they could not win.

The young Brick couple tried to give their daughter, Kaliann, and son Tyler the best lives they could, despite the fact that both children suffered from a cruel, incurable disease that would kill them both.

Late Monday afternoon, Batten disease won again.

Four-year-old Tyler Fox died. He died only nine months after his sister Kaliann. She left this world last September, when she was 5.

"Our beautiful little angel went up to heaven this afternoon," Michelle Fox wrote in a post on caringbridge.org. "Tyler Michael, our sweet baby boy, is now at peace. Tyler had aspirated and was fighting a terrible lung infection. He slipped into a coma early this morning and went very peacefully."

Both Kaliann and Tyler were diagnosed within days of each other with the late infantile form of neuronal ceroid lipofuscinosis (NCL), or Batten disease. It is a rare, inherited genetic disorder that occurs in only two to four of every 100,000 births in the United States.

Tyler Michael Fox, 2003-2007 Michelle and Michael Fox had no idea they each carried the recessive gene for the devastating disorder when they married in November 2000. Childhood NCL occurs when a child inherits two copies of the recessive gene, one from each parent.

Ava, their only remaining child, a vibrant 21/2-year-old, has been spared.

The Foxes' first clue something was wrong came when Kaliann started to have slight seizures two months after she turned 3. She began falling. Her speech deteriorated and the seizures increased. The dreaded Batten disease diagnosis came six months later.

Tyler was tested within days of his sister's diagnosis. He had it too.

The little boy's symptoms progressed more quickly than his sister's. The disease affects the swallowing reflex, which can lead to aspiration. Tyler had trouble swallowing his milk, eating, and often choked in his sleep in his last few months. He tried to walk, but fell constantly.

"Unless he has dada on one side and mama on his other, he has been very sad," his mother wrote. "Please pray for strength for Tyler, patience for Ava and the means for us to be home with them."

I visited Michelle Fox on a sunny, cold day in February, just about a week after Tyler's fourth birthday. Tyler and Ava played on the living-room floor and watched cartoons.

Their 27-year-old mother sat on the couch and talked about what it was like to lose her daughter and the certain knowledge that she would soon lose her little boy. She knew what was coming.

"Right now, we just try to keep Tyler happy," Michelle Fox said. "Tyler gets to do what Tyler wants to do most of the time."

Tyler's space on the caringbridge.org Web site has links to dozens of photographs of the family in happier times. The Foxes didn't collapse in the face of looming death, they rose above it.

They took the children on as many trips and outings as they could. Even when Kaliann was in a wheelchair, they drove her out to the Manasquan inlet, where she could sit for hours watching the sea. Michael wanted his daughter to see what it was like to kayak, so he put the kayak and Kaliann in the children's pool one summer day.

Kaliann and Tyler's cousins and friends dropped by the house often even as their health deteriorated. Tyler celebrated his fourth birthday in February. A birthday cake made out of colored construction paper was on the front door, with four candles. "Happy Birthday Tyler!" was written in the middle of the cake.

There are few real examples of heroes in these days, when someone like Paris Hilton qualifies as a celebrity.

Brick has two of them - Michelle and Michael Fox.