Family Devastated as Sons Diagnosed with Rare Disease Leading to Childhood Dementia
Spokane, Washington – A family has been left devastated after their two sons, six-year-old Michael and two-year-old Oliver, were diagnosed with Batten disease, a rare genetic condition that causes the brain to gradually shut down over five to ten years. The parents, Kristian and Bryden Tucker, also discovered that they carry the gene that raises the risk for the disease.
Batten disease affects approximately one in every 25,000 babies and ultimately leads to the loss of speech, motor skills, sight, and swallowing. Sufferers usually live for only five years after symptoms begin. The Tucker family is now facing the harsh reality that their boys may have limited time left.
Michael, the older brother, first started experiencing seizures when he was around four years old. However, the seizures were so subtle that the family initially didn’t recognize them as such. As the seizures grew more frequent and severe, the family sought medical help.
After various tests, Michael was diagnosed with Batten disease in April. Devastatingly, a month later, his younger brother Oliver was also diagnosed with the same condition. The family’s two-year-old daughter, Talia, does not have the disease but carries the gene.
Reacting to the news, Kristian Tucker said, “It had gone completely under the radar, we never knew anything about it, and there had never been anything similar that we knew of in our near family history.” She added, “After learning about Michael’s diagnosis, it felt like the floor had come away from under me and all stability had gone.”
Although Batten disease typically follows a devastating path that includes seizures, loss of speech, motor skills, sight, and dementia, both boys are scheduled for surgery that will potentially slow down the process. Additionally, they are due to start treatments next month that aim to provide them with a better quality of life. Unfortunately, the treatments will not be able to stop the progression of the disease or improve their eyesight.
Despite the crushing diagnosis, both boys are currently doing well. Michael is fully aware of his seizures, but the family tries to explain to the children that they are sick and that they need to keep going to the hospital to try and prevent further complications. The parents are grappling with the difficult task of explaining the concept of limited time to their children and are trying to delay having that conversation for as long as possible.
In the face of adversity, Michael and Oliver remain happy children, bringing joy to their family. Michael, described as a typical boy who lights up any room, has a speech disorder called apraxia, which makes it challenging for him to communicate clearly. Despite his struggles, he remains in high spirits. Oliver, on the other hand, is mischievous and full of personality, constantly keeping his family entertained.
The Tucker family is determined to make the most of the time they have together. While the future may be uncertain, they continue to cherish the love and happiness they share as a family.