By Melissa Heckscher, Contributing author
Within the 4 years since former NFL participant Eric Stevens was identified with ALS, a deadly, degenerative neuromuscular illness often known as Lou Gehrig’s Illness, he has misplaced a whole lot of issues:
He has misplaced his means to feed and bathe himself. To brush his personal tooth or get himself dressed. To stand up from a chair — or elevate his 2-year-old daughter into the air.
However he hasn’t misplaced his hope. In spite of everything, he can nonetheless stroll unassisted inside his household’s San Pedro house. He can nonetheless eat regular meals. He can nonetheless learn his daughter bedtime tales, sing her songs and cuddle her in mattress.
And he’s nonetheless right here.
“Regardless that it looks as if the top of the world, your perspective modifications on what’s actually vital in life,” stated Stevens, 33, who wasn’t feeling nicely sufficient to do an in-person interview however as an alternative communicated through e mail. “Simply being alive and being current is sufficient.”
Amyotrophic Lateral Sclerosis is a illness through which motor nerve cells can now not ship messages to muscular tissues. It's an irreversible situation that finally renders its victims unable to talk, eat and breathe on their very own, with the typical life expectancy being about two to 5 years after signs seem.
However whereas many ALS sufferers don’t reside previous 12 months 4, Stevens has defied the percentages.
“Not many ALS sufferers can say that they’re nonetheless strolling, speaking and consuming virtually 4 years into analysis; most are useless,” stated Stevens’s spouse, Amanda, 32. “Eric resides proof that experimental therapies can work.”
The Stevens household credit the previous soccer participant’s present situation to the very fact he obtained an experimental remedy known as NurOwn, a drug that has not but obtained FDA approval however has helped a subset of ALS sufferers in medical trials. It stays to be seen how a lot the remedy can gradual the illness — it probably isn’t a treatment— however Eric and Amanda Stevens at the moment are combating to verify different sufferers have the identical probability.
“Clearly a treatment is what we’re all hoping for, however therapy is de facto all that Eric needs,” Amanda Stevens stated. “That would assist flip the illness from deadly to power, into only a situation that he must handle. That’s what we’re combating for.”
Discovering hope in experimental drugs
It was in 2019 when Eric Stevens first seen one thing was unsuitable: His left hand felt weak and his arm muscular tissues had been twitching. He had bother gripping issues together with his palms.
At first, he thought it was an previous soccer damage or one thing that occurred on the job as an LA metropolis firefighter. Stevens performed soccer for Cal and went on to hitch the St. Louis Rams as a free agent in 2013. He joined the Los Angeles Fireplace Division in 2015.
Shortly after noticing the signs — and simply months after his wedding ceremony to Amanda — he was identified with ALS.
“Once you get a terminal sickness like this, clearly a treatment can be the best-case situation,” Stevens instructed the Southern California Information Group in 2019, when his sickness was solely noticeable by a slight slur in his speech. “However what you really need is simply an opportunity to struggle it, an opportunity to reside. Therapy is all we ask for.”
However hope doesn’t come simply. Along with the grim life expectancy, the illness has no treatment, and the few FDA-approved remedies that at the moment exist can solely prolong life by a number of months.
“I’ve had so many sufferers inform me they want I instructed them that they had most cancers as an alternative of ALS,” stated Dr. Namita Goyal, the UC Irvine neurologist who has been treating Stevens since 2021. “No less than now in most cancers there are numerous therapy choices.”
Many ALS sufferers flip to medical trials, however since most research are double-blind, that means solely half of the contributors will truly obtain the remedy and so they don’t know which group they're in. Many ALS sufferers are additionally excluded from these trials as soon as they're two or three years into their illness.
The one different choice is experimental remedies via the federal government’s Expanded Entry, Program (often known as the “Compassionate Use” program), which permits terminally unwell sufferers to obtain drugs that aren't but FDA-approved. For now, entry to those applications is restricted — definitely not strong sufficient to deal with the estimated 5,000 folks per 12 months identified with ALS in america, based on the ALS Affiliation.
However it might get higher. In 2021, President Joe Biden signed into legislation Accelerating Entry to Crucial Take care of ALS (ACT for ALS), which can make experimental medication extra accessible to sufferers who can't take part in medical trials.
Whereas there’s no assure experimental remedies will work, they provide ALS sufferers what they need most of all: Hope.
“Individuals with ALS simply need an opportunity at one thing,” Amanda Stevens stated. “You’re instructed, ‘You might have two to 5 years to reside and there’s nothing we are able to do for you.’ That’s not OK with us. We’re not going to take that for a solution.
“You wish to dangle onto hope,” she added, “but when there’s nothing you’re combating for, then that hope begins to dwindle.”
In that sense, her husband obtained fortunate. He was chosen for a NurOwn medical trial in 2020, and shortly thereafter, was additionally chosen to obtain the drug via the Prolonged Entry Program.
After he obtained 5 remedies by spinal injection each different month, Eric and Amanda Stevens are satisfied the drug works — regardless that they nonetheless don’t know if he obtained the precise remedy within the trial.
“We expect it’s the explanation he's nonetheless talking, consuming nicely, respiratory robust,” Amanda Stevens stated. “He’s nonetheless in a position to stroll, he nonetheless reads our daughter books, sings her songs.”
Goyal gave a cautious nod, including that she sees small decreases in Eric Stevens’s illness development: His respiratory numbers are higher, and his signs aren’t as superior as different sufferers she screens. Nonetheless, whereas two to 5 years is the typical, Goyal stated, she has seen sufferers survive longer than that, even with out experimental drugs.
“I truly assume Eric could also be one of many sub-population of sufferers that we predict could also be a responder to NurOwn,” she stated. “In my expertise, I do assume that I'd have anticipated (his signs) to be extra superior at this level.
“We definitely are cheering him on.”
From ALS to altruism
Whether or not it was due to his profession in soccer or his job as a firefighter, Stevens’s battle has garnered a viral outburst of assist. Inside months of his analysis, a GoFundMe web page began by his brother racked up a whole bunch of hundreds of dollars (as of this writing, that very same web page had raised $1,286,850 in complete), cash that has been used to pay for Stevens’s care.
The household’s mission web page on Instagram, TeamStevensNation, has greater than 37,000 followers, with hundreds of individuals often posting phrases of encouragement.
Realizing they might use their public platform to unfold additional consciousness, Eric and Amanda Stevens shaped the axeALS basis, a nonprofit devoted to serving to ALS sufferers get entry to experimental drugs, and funding extra analysis into causes and potential cures.
Up to now, the inspiration has raised greater than $1 million via donations and charity golf tournaments, which it holds all year long. Essentially the most-recent golf event was Monday, April 3, in Orinda, with others scheduled for June 12 in Newport Seashore and Sept. 11 in Lengthy Seashore.
“Our intentions had been to carry consciousness to the illness and put the highlight on the damaged system,” Eric Stevens stated. “It has change into so much bigger than we ever thought. I'm grateful for all of the assist we’ve gotten and I hope we are able to go away ALS higher than we discovered it.”
Maybe axeALS’s largest triumph got here earlier this month, when the inspiration introduced a partnership with Massachusetts Normal Hospital to determine a brand new Expanded Entry Protocol program for ALS sufferers at UC Irvine. To kick begin this system, axeALS gifted $486,000, which can give 30 ALS sufferers entry to therapy over the subsequent three years.
“Clearly, my aim is, ‘How can I preserve Eric alive?’ However it should assist a whole lot of different folks as nicely, so it’s one thing we’re actually pleased with,” stated Amanda Stevens, who acts because the president of axeALS. “We couldn’t have accomplished it with out all of the donations we've got obtained.”
As for the Stevens household, the GoFundMe web page is getting used to pay for the patriarch’s each day care, a different routine that features chiropractic care, bodily remedy, dozens of nutritional vitamins and dietary supplements, and tools, together with an influence wheelchair that Stevens now wants to depart the home.
The household additionally obtained a $100,000 present from the “Ellen DeGeneres Present” after showing on her program three separate instances. The cash was gifted so the couple may put a down cost on their first house.
All the pieces helps.
The price of supportive look after a complicated ALS affected person prices $200,000 to $300,000 a 12 months, together with misplaced wages, based on the ALS Basis. Neither Amanda nor Eric Stevens is working, with the previous doing all the caretaking for the latter and their daughter.
“It has been extraordinarily laborious watching my spouse have to select up the slack and never with the ability to be as hands-on with my daughter as I all the time imagined I'd be,” Eric Stevens stated. “Amanda will not be solely simply getting by, she’s elevating a sensible, courageous, candy, little woman and dealing with every thing with me.”
With a sort, unwavering voice that tells you she’s used to explaining the ins and outs of their four-year nightmare, Amanda Stevens’s voice solely breaks when she talks about their daughter, Peyton.
“That is all she is aware of,” she stated of the blonde little woman who has her father’s eyes and loves her toy firetruck most of all. “She is aware of her Dad is completely different. She helps me together with his drugs each morning. She is aware of, ‘Daddy can’t decide me up.’
’“However I'll say, he’s arguably probably the most current dad,” she added. “We’re house all day. He sits in that recliner there and spends each single second together with her. That’s the silver lining in all this — that we get to be house together with her day-after-day and that we make these recollections together with her.”
Eric Stevens stated he simply tries to take issues at some point at a time.
“I attempt to concentrate on what I can management, like having an excellent perspective, being grateful for the little issues that folks take as a right like waking up each morning, being with my spouse and daughter and household, my canine, attempting to stay current,” he stated. “I keep hopeful by not wanting too far forward — and clearly you do generally — however it's a must to carry your self again.
“I additionally keep hopeful that I can discover a therapy,” Stevens added, “that may cease or gradual this down.”