Special Needs Trust

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This is a difficult post to write. I had been sitting on it for several months, trying to decide best how to convey the emotions I am feeling.

A few weeks ago, I was asked by a stranger if I had been in a car wreck, as I was wearing my neck brace. I replied that I was in a train wreck, and I was distracted by another person before I could finish my thought. He later asked where the train wreck took place, and I apologized for misleading him, and said I should be so lucky.

When I was first diagnosed with ALS last spring, I was overcome with grief, and spent many hours over the next month sobbing and screaming in rage. Eventually, life took over again, and I set all that aside for a while. After all, I still had two young daughters to help raise.

My Family

Most of my initial fears have come to pass. I remember the initial struggles lifting Sabina, just a few short months after her birth, before we even knew that there was anything close to serious going on. By January of last year, I was not even able to pick her up at all. Fortunately, she began crawling soon after, and had figured out how to crawl into my lap when she wanted me to hold her. I am so happy now when she climbs up on my lap to have me read a story to her or to watch a YouTube video.

And Ashlin has been very understanding and helpful through this whole process. As I have been unable to give hugs for several months, she came up with a method where she pulls my arms behind her back. I just about cried the first time that she did that. The last couple of months have been difficult, as I am no longer able to turn the pages of books when I read to her. At first, she went through a period when she didn’t want me to read to her at all. But then she spoke with Gwen about her feelings about it, and now she turns the pages for me.

Sadly, however, I know that the worst is yet to come. I will be visiting with the ALS clinic soon in order to get a power wheelchair. At the same time, we need to expand our bathroom to accommodate it, and put in a ramp in the back. And yet, that transition does not feel particularly big for me. Much more difficult has been the fact that I need artificial ventilation in order to breathe at night already. Or that I am unable to play frisbee anymore.

Aaron Welch with Advomatic recently set up a Special Needs Trust in my name. This unique trust allows us to use funds contributed by outside sources (we are legally not allowed to contribute to it), while protecting my eligibility to receive care-giving assistance through the state. The funds can be used to support my needs beyond what I will eventually receive from Medicare/Medicaid.

Basically, at some point down the road, I will be on disability and eligible for Medicare. The good news is that this happens almost automatically for a patient with ALS, due to some lobbying in the last couple of decades. As my needs increase, however, I will need more care and will need to become eligible for an attendant care program in PA, for which the income and asset allowance is almost nothing.

If and when I choose artificial, invasive ventilation, I will require 24 hour care. At that point, I would also need to be Medicaid eligible. This is where things get extremely challenging financially. For example, with attendant care / Medicaid, not only do I need to be basically destitute, but the state looks back over 5 years, and if they see that I have given any money to anyone in that time frame, they assume that I am trying to scam them, and dock the time, adding several months or more to the time before I would be eligible.

Based solely on the odds, there is a 50% chance that I will die in 1 to 2 years, although it’s a little more complicated than that. There are two predominant flavors of ALS: bulbar onset (the brainstem) and limb onset. Mine is the limb, which makes it only slightly more likely that I may live for another 3 or 4 years instead.

I want to point out that I am doing everything humanly possible to beat those odds. When they talk about the life expectancy of ALS patients, however, they are really talking about the "survivability", which is the point when a patient would require invasive ventilation to survive. Most of the 10% who will go on to live a decade or more have reached this point and are locked-in as well, trapped in their completely paralyzed bodies.

We have done what we can to protect what assets we do have. We have been consulting with an attorney as the information is very complex and we want to protect the future for our children as best as we can. We know that major purchases are down the road, such as medical and communications equipment, home modifications, a wheelchair, and an accessible van, all of which will be in the tens of thousands of dollars. The cost to support a patient with ALS in the later stages can run easily up to $100,000 a year or more. The funds in the Trust can help support me while I am alive. After I die, the funds remaining in the Trust will go to my wife, Gwen, to help raise our children.

For those who wish to contribute, we have set up a bank account for the Trust. We have set up a PayPal account as an option to contribute. For a one time donation, click on the Donate button. To make a recurring monthly donation, you can select the amount you wish and click Subscribe. Alternatively, we can accept checks for the Trust; contact me for more information if interested in sending a check.

One Time Donation

 

Monthly Recurring Donation

I am angry at this stupid disease. I know from my time with Elisabeth Kubler-Ross so many years ago that this is a natural part of the grieving process, and that eventually I will enter the acceptance phase. I even look forward to that.

But my daughters, Ashlin (8 years old) and Sabina (2 years old), will not have the benefit of the acceptance of my death when it happens. I am being robbed of my time with them, of watching them grow up. It is hard enough to know that I will most likely not be around to watch Ashlin graduate. To know that Sabina will most likely not have any more than a fleeting image of her father from early memories makes me cry.

To add insult to the injury, I am quickly losing my ability to participate in their lives, even now, becoming simply a spectator. What I would give to be able to pick up a frisbee and toss it to my daughters.

I want to thank everyone for all your ongoing support and care. This slow-moving train wreck is more than any family should have to endure.

Comments

aaron's picture

Yes, please spread the word!

Yes, please spread the word! The Drupal community is large and strong, and yet is but a drop in the ocean of Open Source. Thank you for your support and help.

Ryan's picture

Thank You!

Aaron, thank you for having the strength to be even more open and vulnerable by reaching out for help. We are definitely all in your debt, and hopefully we can give back in some small way, financially as well for those of us that are able. Thank you for helping us do it by teaching us so poignantly about your experience and asking so eloquently. I'm sorry that this is happening to you and your family. It's not fair. We are all holding you in our hearts, and looking forward to continuing in community with you.

aaron's picture

Thank you for your support.

Thank you for your support. It is good to know that we have such a strong community to hold us in their hearts.

AaronELBorg's picture

keep on keepin on!

Aaron, sad news.

But I've used enough stuff with your name on it that it merits a contribution to you and your family. (The fact that it's always awesome helps too!)

Anyway.....you, my friend, should be proud of such a great family and a veritable shit-ton of achievements.....

Before I was a programmer I was a caregiver and have a decent amount of experience with caring for someone with ALS. It's real easy to say from this side of the fence (I know) but I guarantee that there is still joy and fun to be had.

Do what it takes to make yourself laugh.

Getting sick of all the advice yet? (I'll stop ;-)

Anyway, life's for the living, death's for the dead, etc.

Hang in there. There will be plenty of good things to come too. No shit.

-Aaron

aaron's picture

Thank you for your wise

Thank you for your wise words. They make me look forward to the days ahead, and it is important to remember to look at the joy in life, from wherever it comes.

Sean Robertson's picture

Very sorry to hear this, will do all I can

I'm broke until the end of the week, but I'll definitely donate then and am spreading the word to other Drupal folks I know.

aaron's picture

Thank you for your support

Thank you for your support Sean, especially in light of your own financial difficulties. As Mr. Spock says, "Live long and prosper."

Renee Coonradt's picture

Help from your martial arts family

Aaron,

Everyone from your martial arts family at Jose Johnson's wants to help. In the past, friends of mine have held fundraisers to benefit trusts. We would like to organize a sub and sandwich sale to benefit your trust. Please contact me, or have Aaron Welch contact me, so we can set something up. We will be here to help you with anything you need.

Warm regards,
Renee Coonradt
rkcoonradt@gmail.com

aaron's picture

I think it would be awesome

I think it would be awesome to have a sub sandwich sale! It would be a good opportunity to get together with everybody at Jose Johnsons. I will e-mail you soon. Thanks for your support. And I love a party.

venkat-rk's picture

I own your book and have

I own your book and have always felt distraught reading about your situation. This post makes it even more so.

One thing I wanted to ask you the last time you posted about a couple of months ago. It's a long shot, but, have you ever considered that this condition may have been triggered by a vaccine? From what I have read on the web, this seems possible.

If you can, in fact, think back to a vaccine event, this would be an adverse reaction and there is a vaccine compensation programme in the United States, although very hostile and unfriendly towards the vaccine injured. The NVIC site (nvic.org) would have more information about how to go about this.

Personally, I will do what I can to help financially.

I admire your courage and strength of mind. May these qualities never desert you in your struggle.

aaron's picture

I am not aware of any adverse

I am not aware of any adverse reactions that I have had to vaccines. Of course, this would be a doozy. Thank you for your support and for the info. I will investigate that as best as I am able.

venkat-rk's picture

Aaron, please investigate the

Aaron, please investigate the work of Dr. Rashid Buttar of North Carolina. He seems to have had a lot of success treating and curing people with neurodegenerative ailments.

venkat-rk's picture

Flu vaccine?

Aaron, did you ever take a flu vaccine? Genuine stories abound on the internet about people who developed ALS within weeks or months after a flu shot. Here is one I came across searching the issue for you. Sounds genuine to me.

Pro-vax people always shoot down such stories, of course. I am not being either pro or anti-vax; just trying to help you in some way.

Perhaps you will find it worthwhile to pursue this line of investigation.

Josh Koenig's picture

:(

Words fail.

aaron's picture

Thank you, those words convey

Thank you, those words convey a lot.

Jody Hamilton's picture

Thanks for letting us help

Thanks for posting this and giving us the opportunity to do what we can to help.

aaron's picture

I saw a catbird outside my

I saw a catbird outside my window about 5 min. ago and thought of you, and the catbird we saw at your house a couple of years ago. Thank you for your support, Jody.

John VanDyk's picture

Aaron, thanks for being bold

Aaron, thanks for being bold and reaching out to the community to share your very personal story. I have not been able to pick up my children for hugs since last fall (had surgery, am getting better) and it's so difficult to not be able to interact with loved ones the way you'd like. Thanks for all your work on Drupal. Our family is thinking of you.

John

aaron's picture

Thank you John for your

Thank you John for your support. I am sorry to hear about your surgery, and I wish you a speedy recovery, although it sounds like it has been difficult. Thank you for all your work on Drupal as well.

brian's picture

A book to consider

I would never recommend this book if I didn't have first-hand experience that the processes do actually work. I certainly have never faced a challenge like ALS, but the co-author of this book is one of the few (only) cases of a person with ALS that was healed. This book is not for the skeptical and it will stretch anyone who can only consider rational thought and explanation for the world. But, it works, it has worked for me on physical and emotional sickness, so I simply offer it as a potential ray of hope in a dark time.

This is not a hokey self-help book and it is not a religious book, although the author professes Christianity.

All the best,
Brian

The Healing Codes by Dr. Alex Lloyd
The Healing Codes

aaron's picture

Thank you for the

Thank you for the recommendation. I have heard of that book, and will look into it.

mherchel's picture

You have a beautiful family.

You have a beautiful family. I wish I could donate more. This could be any one of us, and though I haven't had the pleasure to meet you, this seems to hit home for me.

Good luck for you and your family :)

aaron's picture

You have a beautiful family

You have a beautiful family as well, it appears from your photos. Thank you for your support. I hope that we meet. Maybe in Portland.

Jacob Singh's picture

It's so easy for me to keep

It's so easy for me to keep forgetting about your condition. I remember when you first told me 2 years ago, apologizing for not supporting enough in the Media issue queue. When we spoke together in Chicago you were weak but not very noticeably... To see it all happen so fast is kinda hard to comprehend. I'm sorry I haven't been in touch.

It's so easy to forget how precious everything we have is and how easily it could be any of us. I just go on through life, one sacrifice after another, easily forgetting what is important, forgetting how to be the man I should be. It takes a lot of courage to reach out and ask for help and thank you for doing so. There are a lot of people who want to.

It's cliched, but the way you fight this, the way you are dedicated to your family and your community and your craft is an inspiration. It inspires me to make the most of the time I've got and to be of service. Thank you for that gift.

Lots of love to you, Gwen and the girls.

-J

aaron's picture

I find it interesting how

I find it interesting how even with a terminal illness it is far too easy to get caught up in the day-to-day and forget about the important things in life. Your words are a good reminder.

Thank you for your support.

CrashTest_'s picture

Thank you Aaron

Hi Aaron,

I don't have much to say other than I have a couple of daughters, one of which is just 1 year old, and I just get a gut wrenching feeling every time I think of your situation. I am angry at your disease, and you can bet I will keep doing what I can for you and your family every chance I can afford to.

Thanks for all you have done,

Pat

aaron's picture

Thank you Pat. And a belated

Thank you Pat. And a belated congratulations on the birth of your youngest. I hope that she brings you great joy in life.

John P. Weiksnar's picture

Donation is en route. . . .

We here in WNY are rooting for you. I've already checked out via the PayPal form and of course am sending plenty of supportive wishes.

-John in Buffalo
jpw1116

aaron's picture

Thank you so much for your

Thank you so much for your support, John.

nicoz's picture

Community Support

Aaron, you have contributed so much to Drupal and the entire Drupal community over the years. This is an opportunity for the Drupal community to give back to one of it's own. I have made my donation and I hope other will too!

aaron's picture

Thank you for your support. I

Thank you for your support. I hope to be able to contribute back to the Drupal community for many more years.

Dave Reid's picture

Thank you for sharing

Thank you Aaron for taking the time again to share your thoughts and journey, even though I must imagine sharing it publicly must be painful. Your work that you have put into your family, your friends, your work, and Drupal media is and will forever be something I personally aspire to be and it was an honor to be able to spend time with you in Denver. We'll be sure to be spreading the news making sure everyone knows your story, what you had to say. I hope we can give back the same to you and your family that you've given the Drupal community and your friends.

aaron's picture

Thank you for your kind

Thank you for your kind words. And I aspire to contribute even a 10th of what you do to the Drupal community.

Thomas Svenson's picture

Your a Real Inspiration

Hi Aaron,

Meeting you at DrupalCon Denver, and especially working with you during the Media code sprint was my personal highlights there. Knowing what you are going through is hard to watch, life can be so unjust. But I am also glad to read that you are fighting this, if anyone can beat the odds its you. I'm sure I can speak for the whole Drupal community and say that we are all behind you in this fight.

Unfortunately I am not able to help you financially as I'm going though my own troubles at the moment. However, as soon as that changes I will make a contribution. I would also like to second Alex suggestion about making recurring donations possible, its a great idea.

Hope to see you around for many many years to come,
/thomas

aaron's picture

Thomas, You are doing an

Thomas,

You are doing an awesome job helping to coordinate the Drupal Media Initiative. I wish that I had more time and energy to contribute, and plan to continue as long as I am able. That is why they make eye gaze trackers.

Thank you for your offer to contribute in spite of your own difficulties. I hope that you find prosperity in life.

Thanks,
Aaron

Stephen's picture

Namaste

Dear Aaron,

So nice to see you, greet you, hug you last month in Virginia Beach. Sorry the time was so short.
Your moving letter speaks from the heart, and your words to us and to your daughters will stay with us forever.
Thank you for being you.

blessings from Europe,

Stephen

aaron's picture

Stephen, You are one of my

Stephen,

You are one of my dearest friends. I do wish that I had scheduled my time differently when I was in Virginia Beach so that I could've spent more time with you then. Life is too short.

Thank you for your kind words.

Stay strong,
Aaron

NikLP's picture

Aaron, I've thrown in a few

Aaron, I've thrown in a few bucks. I can't make a massive dent, but all oceans are made up of a large number of drops... At the very least, it's a doff of the cap in gratitude for all your hard work for us.

As someone who lost a parent at a very early age, I can't say that certain aspects of life have been easy, but I know this much - if you can do one thing for your children for the future, if possible do make some sort of record that expresses how much you care for them and love them despite their (later) mistakes - it's so important to know that someone, somewhere loves you unconditionally. I do hope I'm not pointing out the obvious or being patronising with that, but I know that such a (past) gesture would be helping me out of a difficult place right now, when I didn't even get a chance to say goodbye.

I wish you and yours all the best, and feel free to contact me if there's anything I can do. Keep on fighting, you're a good and strong man.

NikLP

aaron's picture

I am sorry for your loss. And

I am sorry for your loss. And thanks for the reminder about recording messages for my children. We purchased a video camera last year with the intention of doing just that. And although we have lots of fun videos of us together, I still have yet to sit down with it and record my "last lecture".

michael kimsal's picture

last lecture

I can hardly imagine what you're going through, but would respectfully make one small suggestion here, and that is to not wait on making a 'last lecture' video. Make several. Your thoughts will change some over time, and your physical condition will deteriorate as well. Make more videos now for your daughters to see in the future, and do as many as you can, as banal as they may seem to you right now (perhaps nothing does seem that way any more?). I know I'd want as much footage/audio/video from someone, however trivial it may be. And having more video of you now before the ventilators and such become part of your life will be easier for them to watch later.

Again, I can't begin to put myself in your shoes, but thank your for being so public about this, and thank you for your drupal work. You've made the world a better place for countless individuals and companies through your contributions, and I hope many of us can help make a small different to you and your family in the coming months via donations.

aaron's picture

Thank you for your

Thank you for your encouraging words Michael. It is good advice, and I will set up the camera today and do just that.

Thomas's picture

Thank you

Thank you for all of your contributions to the Drupal community. Hopefully, there are enough donations to see you through this financially and enough left over to help your children.

aaron's picture

Thank you. I have been

Thank you. I have been overwhelmed by the outpouring of generosity.

Alex Urevick-Ackelsberg's picture

recurring donations

Hey Aaron!

First of all, thank you for sharing your story, and I'm sorry that I didn't see you in Denver (Amy had a medical emergency) and haven't been able to make it out to Harrisburg yet!

I was wondering if it would be possible to setup a recurring donation via paypal? We are planning to donate, but I think we could donate a good deal more if we could do so on an automatic monthly basis.

I hope to make it up to see you soon!

-aua

aaron's picture

I had looked for you in

I had looked for you in Denver, Alex, I am sorry about Amy's medical emergency. I hope that she has recovered and that it wasn't too bad.

We drove through Philly last week on our way to New Jersey, and talked about you and your family. I hope that we have a chance to visit soon.

I have set up an option for recurring payments on the blog now. Thank you for the suggestion.

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.