Toddlers suffer from childhood dementia from rare disease

These young brothers have been dealt a rough hand — no kidding.

Kristian Tucker, a married mom of three from Spokane, Wash., felt as if she’d been punched in the chest after her toddler sons, Michael and Oliver, were both diagnosed with childhood dementia as a result of a rare genetic disease.

“Both of my boys [are] going to be taken from me,” a mournful Tucker, 31, explained to Caters News. “I found out what true devastation really is.”

Michael, 6, and Oliver, 2, were diagnosed with type 2 Battens disease, in April and May, respectively.

“How do you explain to a child that they have limited time?” she questioned. “We’re putting it off for as long as possible.”

The sickness stems from a group of inherited nervous system disorders that cause gene mutations, per the National Institute of Neurological Disorders and Stroke.

Battens reportedly affects one out of every 100,000 children globally. 

In May, three-year-old Florence Swaffield, from the UK, was diagnosed with the disease just months after walking in her parents’ wedding. And in 2017, a desperate family issued a public cry for help in raising $1 million in funds towards combatting the ill effects the genetic defect was having on their six-year-old daughter, Mila.

In both cases, the girls began developing symptoms similar to those of Michael and Oliver.

“What typically happens with Battens disease is seizures, loss of speech, motor skills and sight, dementia and eventually death,” said Tucker. 

Tucker and husband Bryden, 34, first noticed an oddity in Michael’s eye function just before his fifth birthday. 

“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,” said the mother. 

“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,” Tucker continued. “However, it started happening more and more as he was walking, playing, and eating, and we started to think that this was not normal.”

Concerned for his health, Tucker and Bryden took the eldest of their brood to his doctor, who referred them to a neurologist. The specialist confirmed that Michael had regularly been suffering seizures. 

“He started various medications but nothing was helping him,” said Tucker. “So the doctors decided that they wanted to do some genetic testing on Michael, and on me and my husband.”

But Tucker received the shock of her life in April, when the test results showed that she and Bryden were both carriers of type 2 Battens, and had passed their genes along to Michael, who was now stricken with the deadly illness. 

“I’d never heard of Battens disease, so I googled it straight away,” said the mom. “I just broke down in hysterics. How could this be happening to my baby?”

“It had gone completely under the radar,” she added. “We never knew anything about it and there had never been anything similar that we knew of in our near family history.”

Following Michael’s grim prognosis, Tucker and Bryden opted to test their daughter Talia, 4, as well as Oliver, for the disease in May.

The already-heartbroken parents were doubly crestfallen after it was determined that their youngest child Oliver was, too, afflicted by Battens.

“After learning about Michael’s diagnosis, it felt like the floor had come away from under me and all stability had gone,” said Tucker. “It was totally devastating, and then I had to go through it all again with Oliver.”

The results showed that Talia does not have the life-threatening disease; however, she is a carrier. 

According to the Cleveland Clinic, younger children like Michael and Oliver, who are diagnosed with sickness during early childhood, usually do not live “more than five or six years after symptoms begin.”

But the Tuckers are working to extend their sons’ lives for as long as possible. 

“[Battens] tends to follow that straightforward path,” said Tucker. 

“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,” she added, “but it won’t stop or do anything for their eyesight.”

Their declining health notwithstanding, Tucker says her boys have remained in good spirits. 

“Michael is aware that he’s 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,” said the mother.

She went on to describe her oldest tot as a loving, cuddly, “mommy’s boy,” who delights in making his younger siblings laugh — despite his speech impediment. 

“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,” said Tucker. “He struggles a lot, but he is always so happy and in a great mood.”

And her two-year-old is just as cheery and fun-loving as his brother. 

“Oliver is mischievous and is always trying to climb and escape his baby gate. He’s a wild child with so much personality,” Tucker gushed. “He’s hilarious and loves his big siblings. He is a daddy’s boy and loves hanging out and being close to Bryden.”

And in the face of their imminent fates, Tucker says she and Bryden are soaking up every second they have left with their spirited little boys. 

“They’re such happy kids,“ she said. “We are just making the most of the time that we have together as a family.”