Rally for Ryan

Hi, my name is Ryan on April 18th 2022 I was diagnosed with Batten type CLN5, a sporadic genetic disease. Unfortunately, this type is also fatal, affecting only 1 in 100,000 individuals.

In just a few months since I was diagnosed, I've found myself dealing with the harsh reality that my deterioration has become my new normal. New normal means slowly losing the ability to walk, losing my speech, sporadic recurring seizures and eventually vision loss. It has been a trying few months to say the least.

In spite of the challenges, I've chosen to take joy in the little moments and live with happiness. I love being in the water with my family, singing "let it go" at the top of my lungs, watching Elsia and Annia on Youtube (I could watch for hours if my parents let me) and while traveling for my medical treatments, got to see some pretty cool sights. I went to my first baseball game, saw the most massive waterfall and even get to enjoy equally sized ice cream cones.

As my condition progresses, I will need to modify my home, transportation and living expenses. Your donations would be greatly appreciated in making my journey a little more easier.

You can learn more about Battens at www.livingbatten.com