Our story about Lucas Larkin is a 4 year old little boy who deserves the very best.

A couple months ago Lucas was diagnosed with CLN2 Batten's Disease. It's an incredibly rare disease, and Lucas is the ONLY child in the state of Utah to have this disease. Some of the common effects of this disease are loss of mobility, blindness, and speech loss. He currently must undergo 4.5-hour long transfusions every 2 weeks to give medication. He's already experienced many seizures and undergone multiple surgeries. There is currently a cure in the works, but it is years from being finalized.

On May 28,2022 - Lucas had his first treatment. There were some small hiccups along the way at the hospital, but everything worked out and he had his infusion. It was a very long day, so wagon rides and French Fries made it much better. We noticed the next day (Saturday) that Lucas’s limbs were very shaky. After talking to some awesome CLN2 parents from across the world. We were told that the jittery limbs were normal for a day after treatment. On Monday, his tremors were worse and affected his entire body. He took a couple falls. We talked to his neurology team, and they suggested bringing him to Primary Children's ER. Lucas did stay overnight hooked up to an EEG to monitor his brain activity to make sure that the tremors weren’t connected to any sort of seizure. They found that they weren’t, and that they are probably a side effect from the Brineura infusion. I personally think, if you have cell buildup over the course of almost 4 years, you will see a reaction from the body trying to flush it. We hope that the tremors will get better with time, and additional treatments. It hasn’t stopped us from going out and doing fun things. Lucas especially liked “digging” for fossils at Dinosaur Park.

AG Run For A Reason 5k - Ogden 2022

Raising money for Lucas and his family, Taylor and Rachel Larkin

Team Members