Rob Fights ALS!

I truly didn’t know if I would ever be able to share this news of my husband being diagnosed with a terminal illness.

First, little bit about him. My lovely husband (40) and I (35) have been together for 17- 18 years. We have 3 beautiful children together our boy is 12, our middle girl is 7, our youngest girly is 4! To know my husband is to know an a goofy dad, a younger brother, an adoring son, a kind glance, a giver, a hard worker, an authentic soul, a just man, a believer, a profound thinker, a lame joke teller, a natural athlete, a music lover, a poet, a provider, a lover and so much more. He is my number one fan. And I his. I’ve had the honor of knowing and loving him for more than half of my life. And I thought we would grow old together…

Still praying for a miracle that we will.

Rob got his ALS diagnosis in April 2023. The disease is brutal and scary, it slowly, or quickly depending on the person start shutting down every part of your body until eventually your body stops working and you pass away. There is no cure.

When we first spoke to the doctor they seemed so hopeful, “he is young” they said, “people are living longer on als now a days” they said. Cut to 5 months after the diagnosis and my husband can barely speak, he can barely get out of bed, he can barely chew food to where a feeding tube is a very real next step, he’s lost so much weight, he is starting to his balance, he can barely enjoy time with his children. It seems he is progressing at a lighting pace.

My husbands treatments are experimental. Conventional medicine has absolutely no cure and they refuse to cover his 3rd ALS medicine through insurance. We found some treatment centers that claim they can help but they are not at all covered by insurance and honestly at this point it’s looking like our only hope. His current treatment is 30k for 6 weeks and his next experimental treatment, with travel, lodging, testing and treatment will be 30k for 3 weeks and 2k per week following indefinitely. Making treatment for a year around 130k!!

I absolutely did not want to create a go fund me but this is bigger than my pride. It’s literally life and death.

Anyway, this has been so long. And so sad and we are feeling so vulnerable right now. I hope you just understand how much this would help our family. And how eternally grateful we are for you.

With love, Veronica, Rob and our children.