A family has been left devastated after brothers, aged just six and two, were diagnosed with a rare disease that will lead to childhood dementia.
Michael and younger brother Oliver, from Spokane, Washington, were diagnosed with Batten disease – a group of rare genetic conditions that cause the brain to gradually shut down over five to ten years.
Michael was diagnosed with the condition after suffering increasingly severe seizures and, out of an abundance of caution, the rest of the family got tested.
A month later Kristian Tucker, 31, and her husband, Bryden, 34, learned that their youngest had also inherited the condition. Kristian, Bryden, and their four-year-old daughter, Talia, carry a gene that raises the risk.
Batten disease affects about one in 25,000 babies and eventually sufferers lose the ability to speak, move, see and swallow, and usually live for only five years after symptoms begin.
A family has been left devastated after brothers Michael (right), six, and younger brother Oliver (left), two, were diagnosed with a condition that causes childhood dementia
Kristian Tucker, 31, from Spokane, Washington, and her husband, Bryden, 34, with their boys and daughter Talia, four. Medics revealed the boys had type two Batten disease that means the brothers will suffer seizures, loss of speech, motor skills and eyesight, and dementia, ultimately resulting in limited time
Kristian said: ‘Michael first started having seizures when he was around four years old. However, they were so subtle, we didn’t recognize them to be seizures.
‘Around the time he was turning five, his eyes started rolling, and we just assumed that it was something new he had learned to do.
‘However, it started happening more and more as he was walking, playing, and eating, and we started to think that this was not normal.
‘We took him to see the doctor, and we were referred to a neurologist who confirmed that these were seizures and not just Michael rolling his eyes.
‘He started various medications but nothing was helping him, so the doctors decided that they wanted to do some genetic testing on Michael, and on me and my husband.
‘The results came back to show that Bryden and I were both carriers of type two Batten disease, and Michael was diagnosed with the disease in April.
‘I’d never heard of Batten disease, so I googled it straight away. I just broke down in hysterics. How could this be happening to my baby?
‘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.
‘Due to the results, they then wanted to test our other two kids, Talia and Oliver. A month later we found out that Oliver also has the gene and in May and was diagnosed with the same condition.
Michael was diagnosed with Batten disease first, and after genetic testing on the rest of the family, it was discovered that Oliver also had the same diagnosis while the rest of the family were carriers
Brayden with sons Oliver and Michael
‘Talia doesn’t have it, yet she is a carrier.’
After her youngest was diagnosed with the same condition as Michael, Kristian felt like she had been punched in the chest.
She says that she couldn’t believe she was going through it again.
Kristian added: ‘After learning about Michael’s diagnosis, it felt like the floor had come away from under me and all stability had gone.
‘It was totally devastating, and then I had to go through it all again with Oliver.
‘Both of my boys were going to be taken from me. I found out what true devastation really is.
‘What typically happens with Batten disease is seizures, loss of speech, motor skills and sight, dementia and eventually death.
‘It tends to follow that straightforward path, however, both boys are scheduled for surgery that will slow down the process, and are also due to start treatments next month that will give them better quality of life, but it won’t stop or do anything for their eyesight.
‘Despite the crushing diagnosis they both have, they are doing good at the moment.
‘Michael is aware that he had seizures, but we just tell the kids that they are sick and we have to keep going to hospital to try and stop them from getting even sicker.
‘How do you explain to a child that they have limited time?
‘We’re putting it off for as long as possible.
‘Michael is a typical boy and lights up any room. He also had a speech disorder called apraxia, which means his brain struggles to tell his mouth how to move, and sometimes it is hard to understand him. He struggles a lot, but he is always so happy and in a great mood.
‘He’s definitely a mummy’s boy and loves to cuddle. He loves his little brother too, playing with him and making him laugh. He is the ideal big brother to Talia and Oliver.
‘Oliver is mischievous and is always trying to climb and escape his baby gate. He’s a wild child with so much personality.
‘He’s hilarious and loves his big siblings. He is a daddy’s boy and loves hanging out and being close to Bryden.
‘They’re such happy kids, and we are just making the most of the time that we have together as a family.’
