Bentley Dayn Ryker Louderback is our Grandson, our daughter Cheyenne's only child and only nephew to Cheyenne's siblings, Sydney and Judah. 

At approximately 14mo old (Oct/Nov 2020) we started to notice he was talking/babbling less and didn't appear to be attempting to walk anymore.  After several months of doctors appointments, therapy sessions and a lot of prayer, his condition was still getting worse and early April of this year he was diagnosed with GM1.

GM1 gangliosidosis is a rare genetic disorder that progressively destroys nerve cells in the brain and spinal cord.  There is no known cure for GM1, it is terminal and the outlook is devastating.

We soon found out that there was the first ever clinic trial of a potential cure just days before Bentley's diagnosis, this took place in New Jersey.  We also found out that one other company in California is about to have their first clinical trial this month.  We have been in contact with the founder of the CURE GM1 Foundation (https://curegm1.org) and applied to both clinical trials.

Just two weeks ago we found out Bentley was verbally approved to be pre-screened for the next trial in California.  This would likely involve several months of time spent in California for the prescreen, then if accepted the actual procedure, then frequent follow-up visits.  The time frame could be within weeks or it could be August, we await their follow-up.  

Bentley continues to have physical therapy multiple times per week, he must remain healthy and strong enough to be approved during the pre-screen process.  We ask for your prayers most of all, this has been a very difficult time for our family and especially Bentley.

We have set up a savings account with Central Bank of the Ozarks for Bentley.  If you choose to donate, those funds will go into that account and be used for his expenses.  Right now there are very few, primarily travel and doctor/therapy visits, but we have no idea what we as a family are up against in the coming months and likely years.

Thank you for your time, thank you for your prayers.

-The Louderback Family (Rufus & Martha, Cheyenne & Bentley, Sydney & Judah)