A 4-Year-Old Was Learning to Speak, But he Forgot his First Words Thanks to Batten Disease

According to a story from the Leamington Observer, four-year-old George Young’s first words were ‘mama’ and ‘papa,’ but he did not know how to say them for very long. George’s speaking ability did not last thanks to his Batten disease, a disease of the nervous system that causes learning regression and other symptoms that are eventually fatal.

Batten disease is a disease that affects the nervous system. The illness is caused by a genetic mutation. There is some confusion as to how this term is used; some doctors use the term Batten disease to refer to a specific type of juvenile neuronal ceroid lipofuscinosis. However, it is also becoming more common to use the term to refer to this entire group of diseases. Symptoms include seizures, vision problems, changes to behavior, slow learning or regression, loss of coordination, and repetitive speech. This rare disease can be difficult to diagnose, leading to significant delays in treatment Generally, functionality decreases rapidly over the span of a few years; many patients do not survive past age ten. To learn more about Batten disease, click here.

Thankfully, it did not take very long for George to get diagnosed. However, he unfortunately has a particularly rare form of the illness that has no currently available treatments. This means that there is nothing to be done to prevent his early death or slow down the progression of the disease. While there is little hope that he will survive, his mother Claire is making sure to make the most of the time that they have together.

So far, George has met the guards at Buckingham palace, taken a ride in an expensive sports car, and flown in a helicopter. Claire also plans to take him indoor skydiving and to the Birmingham Museum in order to meet “Dippy the Dinosaur.” She is also planning to get involved to raise awareness about Batten disease.

Claire has gotten involved in Dementia Strikes Children Too campaign, which aims to raise awareness of Batten disease and other childhood disorders that can cause dementia-like symptoms. Some caregivers have not even heard of Batten disease. Hopefully, this campaign will have the impact necessary to spur new research to develop more treatment options for this deadly illness. To learn more about the campaign, click here.

Share this post

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

© Copyright Patient Worthy

Close Menu