Life after loss: A young couple tries to go on
Michelle and Michael Fox are grateful for the community's support
BY PATRICIA A. MILLER Staff Writer

ERIC SUCAR staff Michael Fox and daughter Ava, 2, share an apple at their Wood Avenue home, while wife Michelle discusses how they have coped since the death of Ava's brother and sister over the past year from a rare inherited genetic disorder. See story, page 3.

BRICK TOWNSHIP - Michelle and Michael Fox are like most young couples. They try to pay their bills on time and put a little money aside when they can.

But unlike most, they are not saving for a car, a cruise or a wide-screen television. The Foxes are saving for a double headstone for the young daughter and son they lost within nine months of each other.

Kaliann Rose, who died at age 5 in September 2006, and Tyler Michael, 4, who died in July, lie next to each other in Greenwood Cemetery in Brielle.

The couple still has several thousand dollars in medical expenses left over from Tyler's illness. But her children's headstone is a priority, Michelle Fox said.

"We don't want to spend money on that until we get the kids a stone," she said. "I want it to be nice."

ERIC SUCAR staff Two-year-old Ava Fox frolics in the family's living room while her parents, Michelle and Michael, discuss the loss of their son, Tyler, (bottom right) and daughter, Kaliann, (bottom left) to a rare genetic disorder this past year. Ava does not have the disease.

Kaliann and Tyler both died of the late infantile form of neuronal ceroid lipofuscinosis, more commonly known as Batten disease. It is a rare, fatal inherited genetic disorder that occurs in only two to four of every 100,000 births in the United States.

Losing two children in less than a year was "like a nightmare," Michael said.

Michael and Michelle had no idea they each carried a recessive gene for the disease when they married in 2000. Only their 2-year-old toddler Ava has been spared.

"We have Ava," her mother said. She smiled as she watched her daughter romp in the living room of their Wood Avenue home. "She gets us through a lot. We wouldn't be here if we didn't have her.

The Sunshine Fund, a nonprofit fund set up to help the young family with expenses when Kaliann and Tyler were still alive, is now closed.

Michael, who stayed home with Michelle to help take care of the two children, has gone back to work. Michelle, 27, plans to stay home with Ava until the little girl is ready for school.

Tyler died in his parents' bed on July 9. He had been unable to walk for months and could not eat. The only thing that comforted the little boy was to have his mother and father on either side of him in the bed.

"Tyler wanted us both with him, Michelle said. "We were both with him. It was the three of us."

They watched the same three movies with Tyler, over and over again, to keep him happy. His favorite was "Back to the Future."

"We watched that movie probably a thousand times," Michael said.

Batten disease is especially cruel. Kaliann and Tyler had the worst form - the late infantile stage. It began for both of them with seizures, then progressive muscle and mental deterioration. In the end, neither child could walk, talk or swallow.

Tyler had aspirated and developed a lung infection. He became comatose the last week of his life and slipped away peacefully in the late afternoon of July 9. Both Michelle and Michael were with him when he died, just as they had been with Kaliann.

CHRIS KELLY staff

The day after Tyler died, the young family left their house to stay with Michelle's parents, Ron and Elsie Stinton, who live about a block away.

They stayed away for more than three months. It was too hard to go back. Ava was afraid to go to sleep. She was afraid to stay in the house, Michelle said.

The Foxes moved home about a week ago. And it's still hard. The children's clothes are still in their bedroom closets.

"I honestly still don't think it's hit us," she said. "I still have a problem with clothes. It's been a rough couple of weeks. Everywhere we look, it reminds of us of them. Mostly in a good way."

For Elsie Stinton, the loss of Tyler and Kaliann is still unbelievable.

"I was just telling my husband this morning that it all still feels so surreal," she said. "I really can't speak for my daughter and son-in-law. We all kind of try and protect each other. We are all kind of grieving in our own way. It's been quite a trauma."

Her faith has been tested by the loss of her grandchildren, Stinton said.

"Not to say it's affected our belief in God," she said. "But it's definitely rattled us in that area. I'm sure in time we will heal."

And Stinton marvels at her daughter and son-in-law's strength.

"I honestly can't say I would have done nearly as good a job as she has in handling all of this," she said. "We were very, very close with Kaliann and Tyler. We were very fortunate to be that close. It's been difficult for us to see our daughter and son-in-law suffer, as well as having to feel the loss ourselves."

The Foxes are grateful for all the financial and emotional support they received from so many people during their ordeal.

"To everyone that donated to the fund, cooked for us, helped out watching Ava, we wouldn't have been able to get through this without the support and prayers of everyone," Michelle said.

Michael and Michelle each have tattoos on both wrists. One says "Kaliann" the other says "Tyler."

The Foxes threw a Halloween party for Ava a few weeks ago. She had 20 little guests, a piñata, costumes, candy and cupcakes.

Life goes on.

To learn more about Kaliann and Tyler Fox, visit www.caringbridge.org and type in kaliannfox or tylerfox in lowercase letters. Michelle and Michael Fox welcome any memories friends may have to share about their children.