What you’ve made possible

We closed out 2022 with a few (literal) bangs. Our contractor completed our long-planned bathroom modifications to make a safer space for José to navigate for bathing and toileting.

Given the constraints of the existing space, we weren’t able to incorporate ADA specifications to a tee but our contractors worked very closely with us to understand our needs and work within the limitations of the bathroom’s footprint and the building’s rules.

While it may not look like much of a transformation, the extra space gained from removing the tub and pushing out the footprint of the shower towards the toilet makes it safer for Jose to be transferred into and assisted while in the shower.

This renovation and the many trips taken to Dallas during 2021 to 2022 to participate in the Healey ALS Platform Trial would not have been possible without the generous contributions of so many people to our GoFundMe campaign.

The cost of living with this disease is significant—well over six-figures per year and over seven-figures for the duration of the disease, on average (if you’re curious, just Google, “cost of living with ALS”). So while we are extremely privileged to have good health insurance and the means to purchase most of what’s needed, there’s no way we could have gotten to this point without additional help. For that we are humbled and extremely grateful.

In the coming weeks we’ll be sharing a few more posts to catch you up on all that’s happened over the past few months. It’s been quiet on the blog because life has extra been busy as we continue to learn and adapt to living with ALS.

As always, thanks for reading and for being part of our support squad!