Lynsey and Caleb

7 Years Old, Leeds

Caleb was diagnosed with Batten disease, a form of childhood dementia, in December 2013, at the same time as his older sister Ellie Mae.

While his condition has deteriorated, requiring 24-hour care from his mum Lynsey, Caleb has since turned seven, and continues to enjoy reading stories with his mum. But Ellie Mae passed away in 2015, just 18 months after her diagnosis.

After developing perfectly normally until she was three, Ellie Mae started experiencing seizures. As is often the case with her particular form of childhood dementia, her case was misdiagnosed as epilepsy. Her mum was forced to watch as Ellie Mae’s learning plateaued and eventually began deteriorating. It wasn’t until 18 months later that Ellie Mae received the right diagnosis. She actually had Batten Disease, and a life expectancy of between 6 to 12 years.

“They did test for genetic disorders,” Lynsey remembers, “but they tested for common ones. The more rare diseases are more expensive to do the testing for.”

By this point, Ellie Mae had lost the ability to walk or talk. Lynsey watched as her daughter became blind and bed-ridden. As Caleb began to follow the same path as his older sister, Lynsey gave up her career to become a full-time carer to her two children.

“I had the two of them both unable to walk, both in wheelchairs, both unable to feed themselves, losing their speech. I think emotionally it’s just very difficult not being able to fix it, because that’s automatically just what you want to do, and realising that there is no fixing it.”

Looking forward, Lynsey wishes that earlier diagnoses were available for rare diseases like Batten disease, a form of childhood dementia. “I think doctors need to test for rare diseases as well as common ones earlier on, because once you are armed with the knowledge you can do something more about it”, Lynsey notes.

“A very sad situation that we’re in at the minute is that there are children being diagnosed with childhood dementia who can’t access treatment even though there is treatment available, because they’re too far progressed when they’re diagnosed. So if they’d been diagnosed 12 months earlier, their future could have been completely different.”

For now, Lynsey and Caleb are focusing on treasuring each day. “I don’t plan ahead at all because the future is not at all assured. With Ellie Mae, she was relatively healthy, and then she declined very quickly over just two or three months. And then we lost her.”

Through all the pain, Caleb’s maintained his great sense of humour, and this is what Lynsey continues to enjoy with him. For Lynsey, some of the most special moments are just watching a DVD at home. “He laughs at a particular bit, and you can just put it on repeat and he just keeps on laughing,” says Lynsey.

“Things that I used to worry about and stress about I don’t anymore because all I care about is that my child is happy and as healthy as he can be.”

 

Job code: EU/CLN2/0298. Date of preparation: March 2018