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WESTON | A FAMILY COPES WITH ILLNESS
Family counts its blessings despite dad's diseaseTwo Weston boys whose lives have been changed forever by their dad's illness are featured on a calendar
Special to The Miami Herald

The Lores -- Will, Tracy, John, John Jr. -- and calendar photographer Jennifer Newman gather to look at the page of the 2007 Children's Faces of ALS calendar featuring the two Lore boys. Dad John was diagnosed with amyotrophic lateral sclerosis in August 2003


JENNIFER COHEN / FOR THE MIAMI HERALD
BROTHERS: John Lore Jr., left, and Will of Weston show off their picture in the 2007 Children's Faces of ALS calendar. Their father, John, is in the final stages of amyotrophic lateral sclerosis, also called Lou Gehrig's disease.
More photosBY JENNIFER COHEN

Every night when he came home from work, John Lore would get down on the floor and play with his sons, John Jr., 11, and Will, 9. He'd swing them in the air, carry them on his shoulders and bound around the house.

Today, Lore, of Weston, spends his days in bed or in a wheelchair, unable to move or speak. He is in the final stages of ALS, or amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. The disease affects nerves in the brain and spinal cord, leading to paralysis. It is fatal.

Most victims' minds remain active and fully engaged, akin to being a hostage in one's own body.

Lore and wife Tracy, happily married for 12 years, had their world turned upside down in August 2003 when John was diagnosed.

''He used to sing in the church choir and noticed he had some slurring of speech,'' Tracy Lore said. ``He went to the doctor for tests and they did not find anything, so he went to a neurologist, who diagnosed him with ALS.''

Now, John Lore communicates by using special eye-tracking computer software, which enables him to scroll through words or letters to complete a whole statement before sending it to a voice synthesizer.

''We had no idea this is what it would be. We were devastated,'' said Tracy Lore, now her husband's full-time caretaker. ``There is no test to diagnose ALS. Rather, the doctors rule out every other disease. We thought it was like MS.''

John, who had no previous health problems, was able to continue working as a senior project director for the Shaw Group, an environmental remediation company, for a year after he was diagnosed. But it became increasingly difficult for him to speak and eat. Lore suffers from the most aggressive form of the disease, which attacks the mouth and throat.

A feeding tube was inserted in 2004. When the disease affected his legs and arms in 2005, he went into a wheelchair.

The cause of ALS is unknown. There is no cure.

''It is not genetic and no one in our family has it,'' Tracy Lore said. ``The average life span for someone with ALS is 18 to 24 months. John has already outlived this expectation.''

When the boys give their father hugs, Tracy will wrap John's arms around them, helping him to hug them back. The couple said they feel fortunate.

''We are still enjoying our time together and we appreciate each other more,'' John Lore said.

``I still have a pretty good life. I cherish every day that I have. It's like I was living in black and white before I got ALS and now I am living in color. . . . There are many blessings that have come because I have ALS. I am blessed by having a wonderful family. Tracy has been my angel and takes good care of me.''

The Lore boys, both students at Country Isles Elementary in Weston, are featured in a 2007 calendar, Children's Faces of ALS, photographed by Jennifer Newman. The project took a year to complete.

All money raised from sales of the calendar benefits the ALS Association Florida Chapter.

The Lore brothers are featured on the month of June with their golden retriever, Max. Previously, the boys had been on both the local news and NBC Nightly News with Brian Williams, in a segment about children of caregivers. But they would have gladly given up the spotlight if it meant their lives had not been affected by ALS.

''We can't do a lot of things because Mom has to take care of Dad,'' Will said. ``I miss being able to go to the movies or to Disney World.''

John Jr. put it more succinctly: ``ALS stinks.''

The Children's Faces of ALS calendar is available at www.als-florida.org for $15.
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