A devastating blow has struck a family as two brothers, aged six and two, have been diagnosed with an uncommon condition that will eventually lead to childhood dementia. Michael and Oliver, residing in Spokane, Washington, were diagnosed with Batten disease, a rare genetic disorder causing a gradual shutdown of the brain over a span of five to ten years. Michael’s diagnosis came after experiencing increasingly severe seizures, prompting the rest of the family to get tested as a precautionary measure. A month later, the family received the heart-wrenching news that Oliver had also inherited the disease. Both parents, Kristian Tucker (31) and Bryden Tucker (34), along with their four-year-old daughter Talia, carry a gene that raises the risk of Batten disease. This condition affects approximately one in 25,000 babies, resulting in the loss of speech, mobility, vision, and the ability to swallow. Typically, patients only live for about five years following the onset of symptoms.
Upon discovering the seizures at the age of four, Michael’s condition was initially dismissed as insignificant, as the seizures were subtle. However, as they became more frequent during everyday activities such as walking, playing, and eating, the family began to suspect that something was amiss. Following a visit to the doctor, they were referred to a neurologist who confirmed the seizures were not just harmless eye-rolling, but rather a neurological condition. Despite various medications, Michael’s condition did not improve, leading doctors to conduct genetic testing on him, as well as on Kristian and Bryden. The results revealed that both Bryden and Kristian carry the gene responsible for type two Batten disease, and Michael was officially diagnosed in April. The news came as a shock to Kristian, who had never even heard of the disease before. Genetic testing was then further extended to Talia and Oliver, resulting in Oliver’s diagnosis a month later. Although Talia does not currently display symptoms, she is a carrier of the gene.
Kristian describes the moment she received the news of Oliver’s diagnosis as being punched in the chest, unable to believe she was going through this ordeal a second time. The devastating reality sank in, knowing that both of her boys were facing an uncertain future. However, there is hope in the form of upcoming surgeries and treatments that will slow down the progression of the disease and improve their quality of life, although their eyesight will unfortunately not be salvaged. At present, both boys are doing well, with Michael being aware of his seizures. The family has chosen to explain their condition to the children as being “sick,” while they continue to seek medical help to prevent further deterioration. It is a difficult task to explain to a child the limited time they have, so the family is putting off that conversation for as long as possible.
Michael, described as a typical boy who lights up any room, also struggles with a speech disorder called apraxia, which affects his ability to move his mouth and communicate clearly. Despite his challenges, he remains cheerful and happy. He shares a strong bond with his little brother, lovingly playing with and making him laugh. Michael is also an ideal big brother to Talia and Oliver. On the other hand, mischievous Oliver constantly tries to climb and escape his baby gate. He possesses an abundance of personality and finds joy in his relationships with his older siblings and father. Despite the devastating diagnosis, the family is making the most of their time together, cherishing the moments they have as a unified family unit.
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