Moms take ALS battle to NYC

Sunday, July 22, 2018
The mothers of the Teen ALS Support Group. At right is Lori Hermstad, and behind her, Lori's daughter Alex's twin sister Jaci. Alex died from a rare form of Lou Gehrig's disease. The mothers hold up the names of their children claimed by ALS.
Photo courtesy of Project ALS

When you want something done, you call mom. Enough moms, and even a deadly disease had best get out of the way.

In 1993, longtime Storm Lake resident Lori Hermstad lost her daughter to a mysterious and often misdiagnosed illness that the family now knows was a rare form of Lou Gehrig's disease. The progressive neurodegenerative disease gradually weakened athletic child Alexandria's muscles starting at age 11, until she couldn't move or speak.

At 17, Alex's long battle ended. But her family has never stopped fighting, in hopes of perhaps saving someone else's child.

Lori is part of a small group of mothers across the country who formed an online support group. Recently, the entire group was summoned to New York City by Project ALS, a nonprofit working to find a cure for the disease.

"I was really anxious. I like to stay in my little bubble, and when they said, 'We want to bring you to New York,' I was pretty uncertain," Hermstad said.

Still, she couldn't say no.

The moms group began to take shape when another mother of a stricken girl heard of the Hermstads' story and tried to reach out to them. Hermstad missed the message the woman sent via Facebook, but later found out about her and connected. The woman's daughter passed away in March. That woman had been in touch with a few others in the same situation, and the moms began to talk back and forth.

"I asked her what she thought about starting a Facebook group, a safe place where the moms could go to talk. We clicked, we all understand each other without having to talk about it," Hermstad said.

In a couple of cases, the children who have passed away were found to have aggressive mutations in the same "FUS" gene as Alex. While ALS - sometimes known as Lou Gehrig's Disease — can impact any age, this specific gene mutation targets young children.

"One night we all just sat around and talked about all the similarities we saw in our children. In every case, our kids inspired us. They were the strong ones, they wanted to give us the strength to get through the day. They were the brave ones," Hermstad said.

Some of the seven mothers lost their children only recently.

"They were pretty fresh in their grief, and I wanted to make sure that whatever we do, we don't offend them or get in the way of them being able to express their grief in their own way. Everybody handles the sadness differently," she added. "We all kind of lift each other up."

Hermstad began to probe her group-mates to see if they would be interested in beginning to write some letters to various groups to raise awareness to the type of ALS that claimed their children.

"Mothers are always mothers, even if children had passed on. We could be a voice for those children. Most people don't even know this disease attacks children," Hermstad said. "I decided to reach out to Project ALS. I didn't expect anything — we've all experienced all of this rejection."

The group responded, and wanted to arrange a conference call with the mothers. They decided to share their stories and do some family genetic research.

The mothers were flown to NYC, appropriately, at Mother's Day time. Though they had known each other online, it was the first time they had met, as they were gathered around a conference table.

For the entire stay, the women were miked and filmed. They reviewed an "overwhelming" amount of new medical research, and were interviewed by major news outlets including USA Today, Bloomberg and the UK's Daily Mail Online. “Good Morning America'” is also interested in covering them, though Hermstad noted that a royal wedding at the same time may have overshadowed their news window.

Project ALS is run by two sisters who lost their sibling, who was a well-known Hollywood producer. The well-connected organization has raised over $75 million for research in its 17 years.

The CEO of the organization (and daughter-in-law of the New York Mets owner) told the women, "I am a mother too. We need to get in people's faces — this story needs to be told."

A test is now available for the kind of gene issue that impacted Alex, just beginning to emerge shortly before her death, and confirming her ALS disorder.

"It is still such a frustrating process because it is so hard to diagnose. Doctors are still telling these mothers that this is in the child's head, that it's an eating disorder, or some other kind of misdiagnosis," Hermstad said.

Research is now diving deep into gene mutation. All of the mothers on the trip gave their blood for future research. Hermstad's daughter Jaci, a twin to Alex, also took part in the trip, and was asked to undergo a skin biopsy. Doctors want to learn why Alex developed the mutation while her identical sister did not. The information from the young woman, a recent college graduate, could be crucial.

"They will grow her tissue into stem cells, and study some tissue donated from Alex against it," her mother explains.

A world-renowned researcher at the event told the Hermstads that since the genetic disorder targets children, Jaci at nearly 25 would have likely have shown symptoms well before now if she was going to develop ALS.

"That gave us a sigh of relief. Just hearing that made the whole trip worthwhile," Hermstad said.

Still, "I never want to see another child suffering from something so horrific. I never planned to do something like what took place in New York, but we were handed an opportunity, so we have to forge ahead."

Wherever she goes, Hermstad says, she seems to run into someone who has lost a loved one to ALS. They are sometimes moved to tears to hear of the mothers' efforts to end the nightmare disease.

Downsizing after the costs of their ordeal, the Hermstads including Jaci have relocated to Spencer. Hermstad will continue to be part of the Facebook gathering, "Teen ALS Parents Support Group."

If being outspoken is needed, she will continue to be.

"I promised Alex that I would keep fighting until either I die or there is a cure," she said, but the limelight remains a place where she is not comfortable. "Hopefully, the cure happens, we all celebrate. But until then, all of us mothers are united, and I know they aren't going to give up either."

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