Zezza Family Fight Against ALS

In 2020 Jamie Zezza was diagnosed with ALS. Jamie, his wife Anne & two boys Jaden  & Brett now face a family fight against ALS. Help us support the Zezza Family Fight Against ALS. The Community of River Falls/Hudson are coming together, along with Cared4-4Life to help support the Zezza Family, as they navigate through these unforeseen times. Cared4-4Life has established this fund to provide the support, so the Zezza Family can continue to enjoy life, as well as the ability to celebrate life. Please donate today and come to one of the Cared4Fest 2022 events to help celebrate and benefit the Zezza Family. Our goal is to Care4 & support the Zezza Family 4Life.   

More About the Zezza Family from the Zezza Family & their fight against ALS:

 

Anne & Jamie met right out of high school and were married just a few years later. It wasn’t until November of 2020 that our world was turned upside down. Prior to November, Jamie was having problems with his left hand. He saw a doctor who said he had carpal tunnel (and prob did). He had the surgery just prior to lock down. During lock down, Dr.’s were following up with patients via zoom. His hand was not strengthening, and he was seeing no progress. In June when things were starting to open up again, he was able to get an appointment in August. They looked at the surgery and could find no faults with it. They referred him to see a neurologist in the Twin Cities. From there he was sent to the Mayo in Rochester where he received his final diagnosis ALS. We spent the first 6 weeks crying a lot. I spent every second that I could researching what we could do to treat this 100% fatal disease. I looked into what other countries had to offer as well. I spoke with others that had lost loved ones from ALS.

 

We decided that we would travel to Mexico to get stem cell therapy that was not yet legal here in the US, because for ALS, the stem cells are injected into the spinal cord. Our first prayers were answered when the Mayo clinic asked us to be part of a clinical trial where they would harvest Jamie’s own stem cells and inject them into his spinal cord over 4 treatments in a one year span. Part of this trial requires that we are at the Mayo 2 or 3 times a month. He is now half way through this.

 

With ALS, there is no road map. The average life is 2 to 5 years. It is very hard to understand that if this treatment is working, we will not be able to continue on it. Once the trial is done, it is done. There is NO compassionate use. It is not FDA approved, and likely will be at least 10 years before it Is approved. Which leads me to the advocacy. We are now actively trying to get laws passed for early access to drugs and treatments that are currently stuck in red tape at the FDA. Multiple people have reached out to us to do benefits, and we declined. I always feel like there is someone out there who needs it more. I want to help other families who are going through what we are. It’s the un imaginable.

 

The picture of our future is so large… that I can only look at today. I would break down and loose all faith . We look at today, and we decide what are we going to do today to make this a great day. It’s the simple things in life. Its grilling out, its sitting around talking with friends and family. Its about our boys. There is a lot of things coming up that I know nothing about, but when that day gets here, I will figure it out. One day at a time. Look only at today. We are now focused on making memories for our boys.

 

Thank you all so much for reaching out. There are so many people in this world that genuinely bring you to your knees with their kindness. Complete total strangers have reached out to us. It makes me cry every time.

 

Please contact The Zezza Family Support Specialist with any questions or concerns. To learn more about the Cared4 4Life Zezza Family Fight Against ALS please visit Cared4-4Life