Help Nate Gillespie fight ALS

Help me fight for my husband’s life

It is surreal to write these words, but this is our reality, so here goes. I am starting this page to ask for your help to try and save the life of my husband, Nate Gillespie, who was diagnosed with ALS in June of 2023. Aside from our children, Nate is the person in this world I love the most and I cannot imagine living my life without him or having to watch our boys grow up without getting to know the amazing person who is their father.

Despite all the odds, we are holding out hope that Nate can heal from this disease. And if he can’t, we will need all the help we can get to pay for Nate’s care and our family’s expenses. As you will read about below, we are also facing a huge house project that is simultaneously both very stressful logistically and our current reason for hope. If you would like to help, you can donate below and we would be so grateful for any amount you can give, large or small. You can also make a big difference by reading and sharing our story and just by helping us hold onto hope on our darkest days.

Nate’s story

We were in the midst of starting our family together – our youngest had just turned 2 and our oldest about to be 4 – when the unthinkable happened. In December of 2022, Nate started to notice a strange weakness in his arms. At first he thought he was just extra worn out from long days of work and evenings of parenting our two rambunctious little guys, but his weird symptoms worsened over time and it gradually became clear something was really wrong. After many tests and a few diagnostic red herrings, we were finally given the worst possible news: it was ALS, a rare neurodegenerative disease that gradually causes paralysis of all muscles – what starts with weakness in the arms eventually becomes a total inability to walk, talk, swallow, or, finally, breathe. We were told by doctors that there is no cure and that the average life expectancy for people diagnosed with ALS is 2-4 years.

As we tried to grapple with the grief and shock of this diagnosis, we’ve also confronted the challenging financial realities of this disease. We’re incredibly fortunate that Nate has decent health insurance to pay most medical expenses, and long-term disability insurance that continues to pay 60% of his former salary now that he’s unable to work. But that’s still a permanent 40% pay cut for the person who’s been the primary earner for our family, and Nate like all ALS patients faces enormous expenses which are not covered by any kind of insurance – in the early stages of the disease, the heaviest costs come from needing to retrofit the home to be fully accessible; in later stages, patients who can no longer manage their basic needs often require 24-hour personal care, which is very expensive and not covered by insurance.. Even with incredibly generous help coming from our parents and families, things are already not adding up. It’s humbling to ask for help, but we could really use it.

A glimmer of hope

Anyone who knows him will tell you that Nate is the most loving, compassionate, and positive person imaginable. When I met him, everyone called him the gentle giant and I quickly fell in love with his quiet sparkle and warm deep laugh. He used to always say “Wait to worry”-- a favorite mantra he learned from his grandpa. Well, we are worried now – it is so hard to stay positive when you are faced with a terminal diagnosis and the prospect of such an unimaginable loss. The doctors tend to say they don’t want to give any “false hope,” but in doing so they shut down any possibility of finding real hope. We are not prepared to settle for that just yet. Since Nate’s diagnosis, we have followed every lead to try to understand what could have possibly caused this disease, to look for any hope of healing, of this not being the last word on Nate’s life.

We learned about the role of environmental toxins as one contributing cause of ALS and decided to do mold testing on our house after repairing some water damage to our porch and basement a year ago. We also got ourselves tested for neurotoxins in our blood. We found out that we not only had high levels of toxic mold in our attic above the porch, but we also had a slow leak in our bathroom causing mold in the floor and in the crawl space below as well. Nate’s blood tests showed off-the-charts levels of toxicity caused by the same type of moldin his blood whereas mine did not – apparently some people have a gene that helps process these toxins and some people don’t. While this probably does not *sound* like good news, for us it is the first indication we have had since learning of Nate’s diagnosis that there could be a specific, identifiable cause for his ALS, and one which offers some hope of healing — through fixing our house and getting Nate the proper treatment for mold toxicity.

We don’t know if this will have an effect on the progression of his disease, but we have real hope that it might. While there is no cure for ALS, broadly speaking, there are hundreds of documented cases of “ALS reversals” – individual people who were cured of ALS. To know that Nate has a treatable underlying condition gives us a ray of hope that Nate might become one of those people, that ending his ongoing mold poisoning might give his motor neurons a chance to recover. To think that there is any chance at all of changing the prognosis we have been handed would be absolutely life changing for me and the kids and everyone who knows and loves Nate (I know there are a LOT of you.)

This big-picture hope is only slightly offset by the short-term chaos unleashed by the urgent mold remediation work on our home. The only bathroom in our little 1917 house ended up being completely demolished down to the studs to remove all mold-affected materials, so we are displaced for the moment and hoping to get this project done ASAP so we can be back home for the holidays. Since our bathroom is already gutted, we are planning to use this chance to also make it ADA accessible with a roll-in shower since Nate may need to use a wheelchair at some point.

Seattle, helpfully, has some of the highest construction costs in the United States, so this unplanned emergency bathroom renovation is going to cost a lot of money. But it will be worth it if the mold remediation saves Nate’s life, or even if it can’t stop his ALS progression it will allow our family to stay in our home in a way we couldn’t before due to lack of accessibility.

Gratitude

We are so grateful for the love and support of our community and we know we could not get through this without you all, without the words of kindness and the offers to help with meals and childcare and heavy lifting. We know that people help in whatever ways they can and we are so appreciative of any and all of your support, whether you know us personally or someone forwarded you our story. Also, if you'd prefer to donate outside this platform to avoid all fees etc., please feel free reach out directly.

Even if you are unable to donate financially, please know we feel and are grateful for your positive thoughts for Nate’s healing, for our ability to stay in our home, and for our kids’ futures. Any funds gathered beyond what we need will be donated to ALS research. Thank you thank you a thousand times thank you. <3