By Melissa Heckscher, Contributing author
In the 4 years since former NFL participant Eric Stevens was identified with ALS, a deadly, degenerative neuromuscular illness often known as Lou Gehrig’s Disease, he has misplaced a number of issues:
He has misplaced his potential to feed and bathe himself. To brush his personal enamel or get himself dressed. To rise up from a chair — or carry his 2-year-old daughter into the air.
But he hasn’t misplaced his hope. After all, he can nonetheless stroll unassisted inside his household’s San Pedro, California, 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.
“Even though it seems like the end of the world, your perspective changes on what’s really important in life,” mentioned Stevens, 33, who wasn’t feeling effectively sufficient to do an in-person interview however as a substitute communicated through e mail. “Just being alive and being present is enough.”
Amyotrophic Lateral Sclerosis is a illness through which motor nerve cells can not ship messages to muscle tissues. It is an irreversible situation that ultimately 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.
But whereas many ALS sufferers don’t stay previous yr 4, Stevens has defied the chances.
“Not many ALS patients can say that they’re still walking, talking and eating almost four years into diagnosis; most are dead,” mentioned Stevens’s spouse, Amanda, 32. “Eric is living 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 medicine known as NurOwn, a drug that has not but obtained FDA approval however has helped a subset of ALS sufferers in scientific trials. It stays to be seen how a lot the medicine can gradual the illness — it doubtless isn’t a treatment— however Eric and Amanda Stevens at the moment are combating to ensure different sufferers have the identical likelihood.
“Obviously a cure is what we’re all hoping for, but treatment is really all that Eric wants,” Amanda Stevens mentioned. “That could help turn the disease from fatal to chronic, into just a condition that he needs to manage. That’s what we’re fighting for.”
Finding hope in experimental drugs
It was in 2019 when Eric Stevens first seen one thing was flawed: His left hand felt weak and his arm muscle tissues have been twitching. He had bother gripping issues along with his arms.
At first, he thought it was an outdated soccer damage or one thing that occurred on the job as an LA metropolis firefighter. Stevens performed soccer for Cal and went on to affix the St. Louis Rams as a free agent in 2013. He joined the Los Angeles Fire Department in 2015.
Shortly after noticing the signs — and simply months after his wedding ceremony to Amanda — he was identified with ALS.
“When you get a terminal illness like this, obviously a cure would be the best-case scenario,” Stevens instructed the Southern California News Group in 2019, when his sickness was solely noticeable by a slight slur in his speech. “But what you really want is just a chance to fight it, a chance to live. Treatment is all we ask for.”
But hope doesn’t come simply. In addition to the grim life expectancy, the illness has no treatment, and the few FDA-approved remedies that at the moment exist can solely lengthen life by a couple of months.
“I’ve had so many patients tell me they wish I told them they had cancer instead of ALS,” mentioned Dr. Namita Goyal, the UC Irvine neurologist who has been treating Stevens since 2021. “At least now in cancer there are many treatment options.”
Many ALS sufferers flip to scientific trials, however since most research are double-blind, which means solely half of the members will truly obtain the medicine they usually 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 solely different possibility is experimental remedies by the federal government’s Expanded Access, Program (often known as the “Compassionate Use” program), which permits terminally sick sufferers to obtain drugs that aren’t but FDA-approved. For now, entry to those applications is proscribed — definitely not sturdy sufficient to deal with the estimated 5,000 individuals per yr identified with ALS within the United States, in accordance with the ALS Association.
But it could get higher. In 2021, President Joe Biden signed into regulation Accelerating Access to Critical Care for ALS (ACT for ALS), which is able to make experimental medication extra accessible to sufferers who can not take part in scientific trials.
While there’s no assure experimental remedies will work, they provide ALS sufferers what they need most of all: Hope.
“People with ALS just want a chance at something,” Amanda Stevens mentioned. “You’re instructed, ‘You have two to five years to live and there’s nothing we will do for you.’ That’s not OK with us. We’re not going to take that for a solution.
“You want to hang onto hope,” she added, “but if there’s nothing you’re fighting for, then that hope starts to dwindle.”
In that sense, her husband obtained fortunate. He was chosen for a NurOwn scientific trial in 2020, and shortly thereafter, was additionally chosen to obtain the drug by the Extended Access Program.
After he obtained 5 remedies by spinal injection each different month, Eric and Amanda Stevens are satisfied the drug works — despite the fact that they nonetheless don’t know if he obtained the precise medicine within the trial.
“We think it’s the reason he is still speaking, eating well, breathing strong,” Amanda Stevens mentioned, “he’s still able to walk, he still 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. Still, whereas two to 5 years is the typical, Goyal mentioned, she has seen sufferers survive longer than that, even with out experimental drugs.
“I actually think Eric may be one of the sub-population of patients that we think may be a responder to NurOwn,” she mentioned. “In my expertise, I do suppose that I’d have anticipated (his signs) to be extra superior at this level.
“We certainly are cheering him on.”
From ALS to altruism
Whether it was due to his profession in soccer or his job as a firefighter, Stevens’s wrestle has garnered a viral outburst of help. Within months of his prognosis, a GoFundMe web page began by his brother racked up tons of 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, CrewStevensNation, has greater than 37,000 followers, with hundreds of individuals recurrently 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.
To date, the muse has raised greater than $1 million by donations and charity golf tournaments, which it holds all year long. The most-recent golf match was Monday, April 3, in Orinda, with others scheduled for June 12 in Newport Beach and Sept. 11 in Long Beach.
“Our intentions were to bring awareness to the disease and put the spotlight on the broken system,” Eric Stevens mentioned. “It has become a lot larger than we ever thought. I am grateful for all the support we’ve gotten and I hope we can leave ALS better than we found it.”
Perhaps axeALS’s largest triumph got here earlier this month, when the muse introduced a partnership with Massachusetts General Hospital to determine a brand new Expanded Access Protocol program for ALS sufferers at UC Irvine. To kick begin this system, axeALS gifted $486,000, which is able to give 30 ALS sufferers entry to remedy over the following three years.
“Obviously, my goal is, ‘How can I keep Eric alive?’ But it will help a lot of other people as well, so it’s something we’re really proud of,” mentioned Amanda Stevens, who acts because the president of axeALS. “We couldn’t have done it without all the donations we have received.”
As for the Stevens household, the GoFundMe web page is getting used to pay for the patriarch’s day by day care, a diversified 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 go away the home.
The household additionally obtained a $100,000 reward from the “Ellen DeGeneres Show” after showing on her program three separate occasions. The cash was gifted so the couple may put a down cost on their first house.
Everything helps.
The price of supportive look after a complicated ALS affected person prices $200,000 to $300,000 a yr, together with misplaced wages, in accordance with the ALS Foundation. Neither Amanda nor Eric Stevens is working, with the previous doing all the caretaking for the latter and their daughter.
“It has been extremely hard watching my wife have to pick up the slack and not being able to be as hands-on with my daughter as I always imagined I would be,” Eric Stevens mentioned. “Amanda is not only just getting by, she’s raising a smart, brave, sweet, little girl and handling everything 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.
“This is all she knows,” she mentioned of the blonde little lady 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 along with his drugs each morning. She is aware of, ‘Daddy can’t choose me up.’
’“But I will say, he’s arguably the most present dad,” she added. “We’re home all day. He sits in that recliner there and spends every single moment with her. That’s the silver lining in all this — that we get to be home with her every day and that we make these memories with her.”
Eric Stevens mentioned he simply tries to take issues someday at a time.
“I try to focus on what I can control, like having a good attitude, being grateful for the little things that people take for granted like waking up every morning, being with my wife and daughter and family, my dog, trying to remain present,” he mentioned. “I keep hopeful by not wanting too far forward — and clearly you do typically — however it’s important to deliver your self again.
“I also stay hopeful that I can find a treatment,” Stevens added, “that will stop or slow this down.”
Source: www.bostonherald.com