NEW GLOUCESTER — Finding out her husband, Josh, had a terminal illness did not prepare Ernesta Kennedy for the cause of the mysterious illness. Her life since has been one of advocacy, rebuilding and support.

With their three sons, Tyler, 8, Chase, 7, and Drew, 5, Kennedy said she’s still in mourning two years after Josh’s death but overwhelmed by the outpouring of support she has received.

They married just before Josh went off to war. She laughed a little when she said it — that part of the story was familiar at least. Josh left for basic training as a reservist toward the end of 2002 and had his orders to the Middle East before graduation.

During his 18-month deployment, he worked security at a fuel farm between Baghdad and Kuwait City, earning an Army Commendation Medal before taking his honorable discharge and going home.

Kennedy said Josh had been home for about six years before they started seeing subtle changes in him in December 2009. It began with slurred speech — nothing drastic, just something that made them think, “huh” and move on.

By this time, Josh was working as a corrections officer for the Androscoggin County Jail and his co-workers were starting to wonder, too. They recommended Josh see a doctor about these symptoms and in March 2010 he found himself in the emergency room with concerns he may have had a stroke.

Kennedy said Josh also displayed symptoms like a “jaw jerk” that alerted the resident examining him to seek out another doctor to confirm what he was seeing.

Kennedy said Josh was immediately referred to a neurologist. By the time of the appointment, Josh was already starting to lose his balance.

By the end of March, Josh was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gherig’s disease. By January 2011 he was confined to a wheelchair.

Kennedy said that was the year they attended their first ALS National Association conference in Washington, D.C.

She said the couple shared their story with U.S. Sens. Olympia Snowe and Susan Collins of Maine. “Josh was always well received,” Kennedy said. “Olympia and Susan just loved him — they were great advocates.”

Kennedy said they returned to D.C. in May for Advocacy Day, when charitable organizations vie for funding. She said everyone they encountered told them, “‘We’ve got your back — we’ll do this because it’s important.'”

Asking for funding for ALS in D.C. is never a difficult task, according to Kennedy.

The disease progressed quickly, leaving Josh as mentally sharp as ever while robbing him of muscular control. There is no cure for ALS. In April 2012, ALS claimed Josh’s life.

Kennedy said she was supposed to return to D.C., but the date fell a mere two weeks after Josh died.

A connection is made

According to the ALS Association, 90 percent of those with adult-onset ALS have no family history or indications of heredity.

However, military members are twice as likely as the general population to contract the disease.

According to the ALS Association website, “Scientists have yet to find a cause for why America’s military veterans are approximately twice as likely to develop ALS than other segments of our population. The U.S. Department of Veterans Affairs recognizes ALS as a service-connected disease and provides financial and medical support to those with at least 90 continuous days of military service.”

The connection does not differentiate between those who served in Iraq, Korea, World War II or whether the service member served during peacetime.

“I’m convinced that it’s the anthrax vaccine,” Kennedy said, “not that the military is ready to admit it.”

Kennedy said it may have been an unfortunate combination of Josh’s genetics combined with military vaccinations, as well as adjuvant components, such as squalene, used in the vaccines.

There was no argument from the Department of Veterans Affairs either.

Kennedy said, “The VA recognized ALS as service connected, 100 percent.”

She said as far back as 2008, the VA officially recognized ALS as service-related no matter when the veteran served.

But the military may have a differing view.

“To this day we’re actually fighting the military, to try to get them to admit what they have done,” she said.

Kennedy said she is trying to get the Army to change Josh’s discharge from honorable to medically retired. Such a change, Kennedy said, would allow her children greater insurance coverage.

Currently, her sons are insured through CHAMPVA until they are 18 due to Josh’s ALS. Kennedy said the insurance offered through the VA is comparable to what she could get through an employer and for that, she is grateful.

“CHAMPVA is great,” she said, “I’m very blessed to have that.”

She said she feels fortunate that the VA so readily categorizes ALS as service related, unlike Gulf War Syndrome.

Kennedy said her children are also eligible to attend state universities for free after graduation.

Since her husband’s death, Kennedy said she has continued to work on ALS related events, chairing the walk last year — her first without Josh.

She said her team of 50 raised “a considerable amount of money” at the walk, each donning camouflaged “Team Kennedy” shirts for all the veterans affected by ALS.

Kennedy was also asked to return to D.C. last year for the ALS National Association conference, but this time with her three boys. There, Kennedy was awarded the Advocacy Award by U.S. Rep. Chellie Pingree, D-Maine.

This year, Kennedy said she will not be able to attend the national conference. However, as part of a nationwide effort, she will be sending baseball cards, each bearing the information of someone living with or who has died from ALS.

These cards will be given to politicians in Washington to commemorate the 75th anniversary of Lou Gehrig’s farewell speech.

Support at home

Throughout her journey, Kennedy said she has seen an outpouring of help from the community. From her “saint friend” Jeffrey Wood, who helped in the home with Josh and the children and assisted the children in D.C., to connections with eHope and the ALS Association.

Kennedy said Wood stays in contact, taking the children one at a time to lighten the load for her. “It was a great bonding experience,” she said, “he’s like their uncle.”

Help was there to assist around the home and with the little things in life, allowing Kennedy to spend valuable time with Josh and the children.

Date nights were established, when the children would be put to bed, allowing the couple to watch a movie or, near the end, to read to Josh.

Kennedy said one friendship still gives her goosebumps.

Kennedy said an acquaintance had given her the name and number of someone she should meet. Feeling funny about contacting a complete stranger out of the blue, she said she let the matter slide.

In the meantime, Josh began attending services at Crossroads Community Church to help build a community to watch over his family — at first on his own, then with the family.

Upon attending with her husband, Kennedy said, she made eye contact with a woman sitting a couple rows ahead of her. At the end of the service, the woman approached her and said, “I feel like I just need to give you a hug.”

That woman was Mary Lobozo. Her husband, Alan Lobozo, an attorney, knew Josh from the jail and came over to meet the family.

Josh could no longer speak, and tried to make the introduction through spelling. As he began to spell Lobozo, it struck Kennedy that Mary was the one she was supposed to call months before.

Since then, the Lobozos have been close friends, providing weekly respite for Kennedy and enjoying the company of the boys.

Kennedy said others have offered — and still offer — to watch the children for her. She said she is very grateful for the support, citing how often after tragedy, help tends to fade away.

Even the New Gloucester Village Store fed the family Tuesday nights for a year, something Kennedy said the owners gladly would have continued to do.

Kennedy also remains friends with Danielle Eaton of the Hospice House in Auburn, where Josh spent his final days. “It remains a special place in our heart, for sure,” she said of her experience there.

She plans to bring “Team Kennedy” back on May 18 for the Hospice House 5K and Remembrance Walk.

“It’s what Josh would have wanted; he had the biggest, warmest heart and he always wanted to help people,” she said.

Even toward the end, Kennedy said Josh spent his final Christmas shopping around southern Maine, buying things on the wish list for a family in need.

“We had some really dark days,” but, toward the end, “we reconnected and fell in love again,” she said.

She said they were able to open up with each other and share their feelings. “It just felt good that we were parting in a good place.”

Kennedy described Josh as a fighter until the end.

“A lot of my strength comes from him, still,” she said.

dmcintire@sunjournal.com