As a popular, long-time educator, Newtown resident Laurena McCarthy was able to make positive, life-changing impressions on hundreds and hundreds of students who came into her classroom as total strangers and left with memories of how much she cared for them.

Today, as Ms McCarthy has become challenged by the advancing effects of ALS, or amyotrophic lateral sclerosis, she is welcoming the kindness of total strangers, as well as loved ones and friends, who are working against the clock to re-outfit her Mount Pleasant residence so she can spend as much time there as circumstances will allow.

One recent chilly Saturday, a crew representing Spirit Builders from the Jesse Lee Memorial United Methodist Church in Ridgefield were at the home building a professionally engineered wheelchair ramp to replace a temporary metal ramp that became much too steep to navigate.

At the same time, husband Bill; his brother, Ron; and a cousin, Don Mikolajczak, who travels all the way from Colchester, continue working on an addition that will provide a full disability equipped bedroom and bath, which will make it possible for Ms McCarthy to remain at home with her family.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, according to the ALS Association.

Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS is not reversible, and there is no current cure.

As motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

Something Amiss

Bill McCarthy said signs that something was amiss began appearing in late 2017, when his wife noticed tingling and weakness in her hands. Then she noticed she was having a problem holding her coffee cup.

“At first, she thought it was humorous, we were laughing about it,” Mr McCarthy said of his wife, a magnet school 5th Grade science teacher in Danbury.

After consulting a specialist, she was referred to a neurologist who quickly referred her to another specialist in New Britain, who diagnosed the ALS.

“We went all over the place seeking second and third opinions — the Cleveland Clinic, the Mayo Clinic, Columbia University — we were hoping we had a misdiagnosis. But now we’re seeing the full blown symptoms of ALS,” Mr McCarthy said. “It was a long process of ruling out everything else.”

While Ms McCarthy’s speech is clipped and slurred, she is often understandable When she is not, the frustration appears to trouble her much more than her husband, who has a hearing impairment, and her middle son, Brandon, who has taken on the role of a 24-hour caregiver.

About a year ago, she and her sons were able to take “a bucket list trip to New Zealand, Fiji, Australia, Bali, and Hong Kong,” Mr McCarthy said. “But by the time she got back from the trip, she was walking with difficulty — it took a toll on her.”

“It was worth it,” Ms McCarthy said.

Besides her memorable trip, she also is celebrating the recent birth of a grandchild to her oldest son, Justin, who resides with his wife in North Carolina and who had a chance to visit Newtown recently.

While she is on long-term disability, Ms McCarthy remains ever hopeful, saying with a big smile that she will be ready to retire from teaching in “a year or two.” Being home all the time has its advantages, though, as she is able to send 12-year-old Max off to the school bus every morning and be there to welcome him home each afternoon.

The decision to fast track creating a bed and bathroom and installing a small deck and ramp came as a result of not being able to get Ms McCarthy up and down the stairs to her original room in their Victorian home, which was built in 1898.

“We’re moving along as fast as we can,” he said. “We have to be very careful so she doesn’t fall.”

Outpouring Of Support

[naviga:u]A GoFundMe campaign[/naviga:u] helped raise more than $19,000 toward the work that had to be done.

“That got us started with the foundation and framing. I’ve taken out a second mortgage to finish the addition, which will have a roll-in shower,” he said. But until the ramp was completed by the Spirit Builders team, the McCarthy’s could not get Laurena out of the house easily.

The next challenge is trying to acquire a specially equipped van so Ms McCarthy can get out of the house and back and forth to treatments, as well as all the other medical supplies and equipment she needs.

Cousin and family spokesperson Lynne Canavan said, “Laurena’s wish is to remain in her home as long as possible. This illness is wiping out their savings and adding even more stress to what is a very difficult situation.”

“The strain of ALS that Laurena has is particularly aggressive,” Ms Canavan said. “She can no longer walk or move her arms, but she can — and does — smile and laugh often. She wants to live as long and as hard as she can. She is always up for an adventure, or for company.”

At the same time, Ms Canavan says Laurena “does not pity herself.”

“As hard as it sounds, seeing her is uplifting; she truly brings out the best in everyone,” she said. “She continues to mentor young people, with an active interest in what they are doing. Here is a truly good person who is experiencing a terrible — and terminal — health crisis, yet she is doing it with grace, humor, and a continued zest for life.”

Anyone interested in helping can visit the McCarthy's [naviga:u]GoFundMe page by clicking HERE[/naviga:u]