Liam received his diagnosis of Batten Disease (CLN2) in 2017. CLN2 is a rare genetic disease, affecting 1 in every 100,000 births. A mutation in a key enzyme impacts the body's ability to process intracellular waste. Essentially, waste accumulates, particularly in the nervous system and retinas. The devastating impact is only realized after the first few years of life, for Liam it was just after his 4th birthday. Over time, this build-up causes seizures, vision loss, developmental regression, and loss of the ability to walk and talk. Inevitably, children with Batten disease have a shortened life expectancy.

Liam receives enzyme replacement therapy every 14 days at Rush Medical Center in Chicago, which helps to slow down the progression of this disease, but there is no cure.

For most families living with a rare disease, there are days that can only be described as overwhelming, challenging, and downright difficult. While this journey is bittersweet, Liam gives us his wonderful gifts each day and most importantly, has given us a new perspective on life, love, and faith. Please know that your love and support lifts us up during the most challenging days.

Donations from Liam's FamFund will go towards the greatest need of the organization - this could be family support, research, or advocacy.