Liam is 10 and loves his big brother Max and his black lab Benny, cheeseburgers, Frosty the Snowman, swimming, rides on the train, the school bus and his golf cart.
Liam had his first seizure in the summer of 2017. After months of doctor visits, tests, and unanswered questions they received a heartbreaking and life-changing diagnosis of Batten Disease (CLN2).
Batten Disease (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.
A new medication, Brinuera, was FDA approved just 8 months prior to Liam’s diagnosis. This enzyme replacement therapy requires a five hour infusion every two weeks, utilizing specialized equipment only available in a few medical facilities. Every 14 days (for the past 6 years) Katie and Liam travel (294 miles round trip) to Rush Medical Center in Chicago to receive the ERT 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 everyone around him so many wonderful gifts each day and most importantly, has given many a new perspective on life, love, and faith.
The Walden family is focused on making sure Liam has the best care possible, and provide him with as many happy moments as they can. We would appreciate your support and prayers for Liam and the Walden family, and all who are affected by this disease. We are grateful for all of your support.
