May 2020
Dear Ellen,
We may not get a miracle, but a little magic can't hurt.....
When I participated in the Ice Bucket Challenge a few years ago I had no idea ALS would eventually affect my family so personally. My brother-in-law John Habermann was diagnosed this past December. As you can imagine, knowing what we know about this unforgiving disease, we were all devastated. But after a few days of catching our breath and accepting the reality of the situation, we took our lead from John. I have noticed the people who have this disease are pretty extraordinary – and John is no exception.
When John shared the news with us he asked for a couple of days of space to wrap his head around it all. But after that he plunged into his “new normal” in a way that lifted the rest of us up. Always smiling, always upbeat, always ready to live life to its fullest. That’s just John. He walks into a room and everyone in that room is the better for it. He is unforgettable. Meet him once and you will remember him for life. This is because upon meeting YOU, you become unforgettable to John. He will ask you questions about yourself, your job, your family and he will really listen to your answers. And he will recall what you told him even if you don’t meet again for another 10 years. That’s because John genuinely likes people. And he will pretty much do anything for anyone. Even a stranger. But especially for his family and friends. John’s joy for life is infectious so you feel happier just being around him. He has the brightest and most fun-loving spirit of anyone I know and makes the best of any situation - even the one he’s been dealt with now.
Perhaps losing both parents by the age of 19 gave John his wonderful perspective on making the most of out each day because there are no guarantees on tomorrow. Before COVID-19 came along John was on a mission to continue doing just that. He retired from his job and started meeting friends for lunch after his morning naps. Even though there is little in the way of treatment for ALS he started taking charge of his medical future, researching every specialist and learning about any available trials. He started physical therapy and acupuncture. We planned a surprise excursion to Yankee stadium (Bronx born, he loves his Yankees!) the details of which I can't share because I am still hopeful we can make it happen. We were in the midst of planning a once in a lifetime trip to London for June because we didn’t know how quickly his disease would progress. We were all doing whatever we could to make the most of our time together. John only looked forward with positivity. He didn’t dwell on what his future might look like relative to his disease - he instead chose to control his future as much as possible. He focused on the blessings of each day , was grateful for what he could still do, and planned accordingly.
And then COVID-19 came along and the world sort of collapsed. And while John is still being John and making the best of things, I can’t help but see how this is impacting him. At a time when he was trying to connect with and spend as much time in person with family and friends as possible, he can’t. At a time when he was supposed to be travelling to North Carolina to participate in a medical trial that might offer some hope, he can’t. At a time when he should be using his voice to cheer on the Yankees, he’s home using it to record phrases for when he can no longer speak. At a time when he should be making me crazy about all the details of our trip abroad, he is instead mastering the fine art of 'travelling' by scooter because he can no longer walk more than a block or two. At a time when he should be living every single moment to the fullest, he is home watching his body slowly deteriorate.
Yet he smiles through it all, continually grateful for all the things he does have. And the most precious of those is my sister Vicki, and their daughter, my amazing niece Alyssa, who has dealt with medical issues of her own and still managed to get herself to Duke Medical School where she is about to start her 4th year.
This has been extremely difficult on my niece. She suspected the ALS diagnosis before any of us but hoped against hope as doctors continued to rule out other causes. She was already dealing with the death of her grandmother (my mom) a couple of months prior, someone who Alyssa had lived with from the day she was born and was extremely close to. Being so far from home in the weeks before her nanny passed away was hard. And now being so far away from her dad during this time is even harder. But she knows how proud he is of her and he will not let her put med school on hold. He wants to see her graduate.
Alyssa (and my sister) are pretty much the only things John worries about. He is keenly aware of the hard road his daughter will face over the next eight years during her last year of med school and then seven years of residency -one she will travel as he gets progressively worse. I know the financial burden medical school has placed on Alyssa weighs heavily on John. It is my understanding she will graduate with hundreds of thousands of dollars of debt as she needed to take out loans for pretty much all of her tuition. I also know John was hoping to help with a small part of that if he could, even maybe just the interest on the loans, but ALS is an expensive disease and now that won’t be possible.
Although they are always willing to give it, my sister and John are not ones to ask for help. Fortunately, they are blessed with a large and loving family and an even larger and loving community of friends. We will all be there for them. We will set up GoFundMe accounts; send funny videos, Zoom and FaceTime during our shelter in place; and when the world rights itself we will plan things to do together and be there in person to help with whatever they need.
But during this time when COIVD has taken so much away from him, I want to help give John a little something more - something I can't really give him on my own: the gift of knowing Alyssa is a bit more financially settled. So yes, that is why I am writing – because you make magical things happen. I thought if you could reach out to Duke on Alyssa's behalf to see if they might consider waiving all or part of her last year’s tuition it would have more of an impact than if I did. Maybe we could even work together to establish a scholarship for students whose lives have been impacted by ALS. (Updated to add: I reached out to Duke on 5/29 and unfortunately they do not have the resources to offer any assistance.) I suspect that anything we raise on GoFundMe will need to be used for John’s care – paying for modifications to their home to make it handicap accessible, purchasing a wheelchair accessible vehicle, securing other specialized equipment, medications., and other assistance - so this request is purely to help alleviate some of Alyssa's financial load. I know it would blow John away to receive such an amazing gift. And I know, as a doctor, my niece will carry with her the lessons of giving back that she has witnessed her father demonstrate. Our healthcare workers are some our biggest heroes right now and I am proud my niece will be joining their future ranks.
You have made a difference in the lives of so many – and I know you’ve recently become more active in the fight to help ALS patients and their families. I am hoping you can add John to the list of people you have helped. It would be such a bright spot for him, especially right now with the world so out of sorts.
I am sure knowing his daughter is a little more settled and that my sister may have a little less to worry about would give John such peace of mind. He so deserves that.
I hope my words - and the words others have shared on this site - will inspire you to at least learn a little more about John and his story.
As you know, ALS is a disease with no cure, no treatment and basically no hope. Its victims know what their future holds and yet continue to face each and every day with a courage and optimism I can’t even begin to understand. The hand that John and others with ALS have been dealt sucks. There’s no other way to describe it. It sucks. And if there’s a chance my reaching out to you could help his daughter and make things a little less sucky, I figured why not. John may not get the miracle he needs (though we are still holding out hope), but maybe he’ll get a little Ellen magic instead.
Thank you for reading this far. Stay well and stay safe.
Sincerely,
Stephanie Hoina
914-420-3445
Update: July 13, 2020
John and Vicki went to NC last week to see if he was still eligible for a drug trial at Duke - and he was! There are no guarantees but we are praying he sees some improvement as a result.
In the months since I created this website John's symptoms have worsened. He's getting progressively weaker. His pulmonary function results went from 90% in March to 70% two weeks ago. And it's getting harder and harder for him to project his voice enough to speak - which for John is probably the worst thing of all because he loves to talk and take command of any room! But his spirits are still good (at least in front of others) and he continues to amaze me every day. They are starting on the renovation to make their home more handicap accessible. Right now he can manage but that's getting harder and harder every day so my sister wants things ready should he need it.
And of course, we are still hoping you will see this letter and want to meet this incredible human! :)
Update: September 2020
Life has taken on a new normal here in NY but at least John has been able to do a little more. We even took a short but much needed family trip to Saratoga in August and it was wonderful. John is having more difficulty eating and swallowing so he had a feeding tube put in a week ago in preparation for when he can no longer eat on his own. His voice has become progressively weaker - and so has his body. But his resolve is as strong as ever. The drug trial doesn't seem to be helping and he is considering switching to a new medication that has been shown to possibly slow symptom progression. But even at a discounted rate the cost will be around $1600 a month and that is not covered by insurance. A bathroom renovation is underway at a cost of around $20K. John and Vicki have refused our setting up a GoFundMe right now because they think they can manage these expenses on their own. In fact, John's optimism is evident as he exclaims "why build up a war chest if I might not even need it?" Ever hopeful that he will beat this, he simply blows me away. My sister, on the other hand, is having a really hard time emotionally. I think sometimes more than John. But she is strong, And we are all helping as best we can. Still hoping for little miracles along the way.
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