Last year, Rebecca Andrews made a promise to her dying sons.
"I promised them that I would never stop fighting for a cure and treatments until I took my last breath," Andrews said. The boys were the victims of a rare genetic form of ALS, also called Lou Gehrig's disease, which eventually took their lives within a year of each other.
Losing a child, let alone two, is one of the most emotionally gut-wrenching experiences a parent can experience. Now, imagine knowing that the rare gene mutation that killed your children is still out there in your family, never knowing if and when it will strike again.
ALS, or amyotrophic lateral sclerosis, is a brief life sentence without possibility of parole, a horrific disease that lays waste to the body's ability to eat, walk and eventually breathe. The progressive disease affects the nerve cells responsible for controlling voluntary muscle movement. As the nerve cells degenerate, they stop sending messages to the muscles, and the muscles gradually weaken, start to twitch and waste away.
Eventually, the brain loses its ability to initiate and control those voluntary movements.
According to the National Institute of Neurological Disorders and Stroke, there is no cure for ALS and no effective treatment to halt or reverse the progression of the disease. According to ALS.org, your chances of getting ALS are 1 in 300 in your lifetime. Nationally, every 90 minutes someone is diagnosed with ALS and someone dies of ALS.
National Institute of Health statistics show that ALS is usually acquired through environmental means, accounting for 90-plus percent of cases. However, genetic forms, called "familiar," account for about 5 to 10 percent. This means that a parent who has a genetic mutation that causes ALS has a 50 percent chance of passing that mutation to each of their children.
This is the killer that lurks inside the Andrews family.
Allen Andrews is a sixth-generation Vermonter. Allen's father passed away from ALS at 39 years old, and his grandfather died of the disease, as well. It was suspected that his Aunt Irene also died of ALS in 1981 before this form of ALS was well-known.
"We knew for sure there were two, his father and his grandfather," said Rebecca Andrews. "We know Allen carries the mutation, and that was passed on to John and Ethan, so does Alan's sister."
The boys were born one year apart on the same day. They lived in North Pownal, where they would explore in the woods behind the house and do the things that brothers love to do together. Both of the boys were athletic. They played little league baseball and soccer, swam competitively, were All-American wrestlers, played flag football and participated in numerous community events.
Even though the boys were so close, they had very different personalities and talents that set them apart. Smart, hard-working and very intelligent, John was academically inclined. He could do anything he put his mind to and be very good at it. Ethan was intelligent as well, but he was more mechanical.
"He could do anything with his hands, taking bikes apart to make choppers and learning how to fix things like it was second nature," Andrews said. Both were kind.
The Andrews moved to Shaftsbury when the boys were 14 and 15. The tick population was massive where they lived, and Ethan took the brunt of that. By 19, he'd been infected multiple times with tick-borne illnesses, including Lyme disease. His joints started to suffer.
At that point, Rebecca Andrews did not fear for her kids because of ALS.
"No. The fear was always for my husband. It never really extended beyond that, because it hadn't ever skipped a generation. But, looking back, we just didn't know," Andrews said.
The Andrews continued to live their lives. "As Allen got older and older, we really thought we were out of the woods," Andrews said.
Ethan is diagnosed
Ethan received his diagnosis of ALS on Nov. 8, 2019, 16 days before the birth of his second daughter. He began having fasciculation months earlier, an ALS symptom where the nerves cause involuntary movement or twitches of the muscles under the skin.
"He was working full-time in maintenance at the Hampton Inn in Manchester, but he was struggling," recalled Andrews. He'd always had aches and pains in his legs from Lyme, but this was very different. His legs grew weaker and weaker, and he was having trouble just pushing his maintenance cart at work.
Then, Ethan fell down the stairs at home.
"We were in Colorado visiting John in September of that year, and Ethan called us to say that he'd fallen down the stairs. He was very upset. I think he knew right then."
Allen Andrews remembers something else from that day. "I remember him saying to me, 'My legs aren't working anymore.'"
Diagnosing ALS is a long, arduous process. There's no simple and definitive blood test. It becomes a diagnosis of exclusion, in which doctors test for every possible similar illness. That's one of the reasons ALS is so hard to treat.
The truth was, though, that the family had its concerns.
"We knew we had this in our family history, and another thing was Ethan always thought that this would happen," Rebecca Andrews recalls. "I remember a premonition he told me about when he was 16 that he'd wind up somehow in a wheelchair."
The family struggled to make sense of what was happening. Ethan's wife was days away from giving birth to their second child, and Ethan became weaker and weaker. They took him to Massachusetts General Hospital's Healy Center for ALS in Boston. The doctors were able to locate the exact gene. It was a rare genetic mutation with a devastating prognosis of months.
Ethan participated in a drug trial at Mass General, which involved spinal injections.
"We knew in these studies that two-thirds of the participants would have the drug, and a third would receive sugar water. The prognosis for a typical case is 2 to 5 years, but we also knew this was not a typical mutation and that our time was very short. Allen's father had died in just nine months. The anxiety was overwhelming.
Then, in early March, COVID hit. Mass General suddenly ended the trial as the pandemic swept the hospital. Ethan had just received his first few spinal injections, and just as soon as it started, it was over.
The Andrews family begged the hospital to let him finish the trial as Ethan continued to worsen, but to no avail. Rebecca and Allen put off any plans they had and came to help Ethan, as his brother John searched for answers after taking a leave from work as a nurse in Burlington. At first, they'd stay just to get him situated, but that soon became 24/7, "especially those last few months," Rebecca Andrews said.
They tried as best they could to make memories that might last a lifetime. They traveled to Florida, Ethan in a specially designed wheelchair for the sand. They went to Disney. They were a family grieving, but they were all together.
In early January 2020, John, Ethan's brother, decided to do the specific gene test before starting a family of his own. "I'm thinking that there's just no way," Rebecca Andrews said.
Three hours to Boston, 20 minutes for the doctor to come back into her office to tell us, "I'm so sorry. You carry the gene."
Sometime that spring, John, now engaged, called his mom. "His voice was garbled, and I thought he'd been eating something, but he was able to get it out, so I understood."
"Mom, I have ALS, too," John said. "I've known it for a while. Here's how it's going to go. In one to two months, I won't be able to talk. Three to four, I'll need a feeding tube. Five to six months, I'll need a tracheotomy and will be ventilated."
"He needed to tell me in his way, straight forward, just like I am," Rebecca Andrews said. "It clicked right then. Suddenly, it made sense to me, and I knew what I didn't allow myself to know until then, those worst fears. Everything followed spot-on to what John had said would happen in that phone call."
Rebecca and son John frantically researched for anything that might delay the inevitable outcome. John wrote a letter to U.S. Sen. Bernie Sanders, partly with his feet because of a lack of ability to use his hands. Sanders was holding up a piece of legislation that would fund pharmaceutical company seed money for research, trials and data collection, Andrews recalled.
"We knew it probably wouldn't help John, but we wanted to push this for others that would come later," Rebecca Andrews said. "We're still waiting."
John and his fiance got married on June 27. Ethan died in July after refusing help from a ventilator.
John, unlike his brother, decided to use any and all methods available to keep him alive. It was a long, hard road. By September 2020, John was on a feeding tube, a trach by October, a ventilator in November and was fully dependent on the ventilator by December.
In July, John passed away almost exactly a year to the day after Ethan.
"I told them that I would be here for them, always, and that I was not giving up on finding a treatment and a cure, that I would continue for them, but more so ...," Rebecca Andrews' voice trailed off. "More so for their children, and Allen and Abbey, their daughter. I have to. I have to fight for this."
The ACT for ALS was introduced in the Senate by Sen. Chris Coons of Delaware and in the House by Rep. Mike Quigley of Illinois. Vermont Sen. Patrick Leahy and U.S. Rep. Peter Welch were among the first co-sponsors of the bill.
Bernie Sanders is the only Vermont holdout. Sanders sits on two vital committees for this bill: the Veterans Affairs Committee and the Health, Education, Labor and Pensions Committee that has jurisdiction to first vote on this bill.
In November, the House passed the ACT for ALS. Of the 331 total sponsors, 187 are Democrats and 144 are Republicans. In the Senate, the AACT has 49 total sponsors. Both Majority Whip Richard Durbin of Illinois and Minority Whip John Thune of South Dakota have sponsored the legislation.
"Bernie objects that he doesn't want to give big pharma money without restrictions, but it's not intended for big pharma. And people are suffering; his constituents are suffering, veterans are suffering," said Andrews. "He needs to come on board."
The Andrews family recently rented a large billboard in front of the Hathaway's Drive-In Theater in Hoosick Falls, N.Y., to help spread the word on what's happening. "We hope that, with enough pressure, Bernie will understand how important this is to Vermonters who are suffering and all people living with ALS and their families."
Before he died, with part of his life insurance money, John created a scholarship fund that bears his name for Mount Anthony Union High School students. Rebecca and Allen continue to maintain that scholarship. "It will be there every year," Rebecca Andrews said.
Ethan's remains rest in an urn in the living room near where his young daughter plays.
"Ethan wanted to be near his children," Rebecca Andrews said, placing a hand on the earthen container wrapped in white ribbon.
His brother, John, rests with his extended family in Center Cemetery in Shaftsbury, next to his grandfather.
"I'm strong, but I'm broken. The only way for me to find peace is to continue giving to others and advocating for what's right," Andrews said. "If I can make rhyme or reason from all of this one day, some family might benefit from all of this loss. I have to try."