A mum has been left devastated after her children were diagnosed with childhood dementia.
Kristian Tucker, 31, from Spokane, Washington, US, and her husband, Bryden, 34, have been forced to come to terms with the incredibly rare diagnosis for their two sons, Michael, Six, and Oliver, two.
Medical staff diagnosed the boys with type two Batten disease, which means that the brothers will have seizures, loss of speech, motor skills and eyesight and dementia. There is no specific treatment to cure or reverse the symptoms and life expectancy can vary.
Some children die in early childhood while others may be able to live into their teens or twenties, according to Boston Children’s Hospital.
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Michael was diagnosed with Batten disease first and after genetic testing on the rest of the family - Kristian, Bryden, Oliver, and their daughter Talia - it was discovered that Oliver had the same diagnosis while the other family members are carriers.
“Michael first started having seizures when he was around four years old, however, they were so subtle, we didn't recognise them to be seizures,” mum Kristian said.
"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 battens 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.
"Talia doesn't have it, yet she is a carrier."
Kristian couldn’t believe that two of her children had been diagnosed with the disease.
"It felt like the floor had come away from under me and all stability had gone," she said.
"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."
The heartbroken mum said the family are putting off telling her two sons that they have ‘limited time’. Despite the diagnosis, both Michael and Oliver are said to be ‘doing good’ right now.
Both boys will have surgery to slow down the process and they are due to undergo treatments to improve their quality of life, but it won’t help their eyesight or stop the disease.
"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."
For help and support with Batten disease, please visit the Batten Disease Family Association (Bdfa) website here or call 01252 416110
Gregory Robinson