Disappearing day by day
I fear the moment when my children don’t know who I am any more…
Loading the car with racket bags, my kids, Taylor, then 12, and Aaron, 9, fizzed with excitement.
It was 2006 and they’d been competing in a badminton championship.
‘You played so well! Better luck next year,’ Taylor grinned at her brother. They both loved the game. Just one of the things they had in common. My husband Andrew and I were so proud. By 14, Taylor was popular and compassionate. And Aaron, then 11, was an advanced reader, having guitar lessons and training for his karate black belt.
But, suddenly, he started struggling to read road signs, forgot how to tie a fishing knot. ‘What’s happening to Aaron’s memory?’ my dad Trevor, then 59, asked one day.
‘I don’t know, but it’s not right,’ I said.
Doctors’ test results were normal, so we searched for a second, third, then fourth opinion.
Andrew’s dad Geoffrey had died at 62 of earlyonset Alzheimer’s.
His grandfather and uncle had battled the disease, too.
Yet doctors dismissed it.
‘He’s far too young for
Alzheimer’s,’ they said. For years, paediatricians and neurologists had no answers. Meanwhile, Aaron’s condition deteriorated. Before long, he couldn’t even manage the stairs.
Andrew and I were terrified and Taylor felt helpless, watching her little brother decline.
By 15, he needed help eating, washing and getting dressed.
Then, one morning, Aaron came into the living room. ‘Morning,’ I said. I watched in horror as he opened his mouth but could only grunt.
Tears welled, panic
washed over his face.
Overnight, he’d lost the ability to speak.
We were devastated – our bright, happy boy was gone.
Aaron was like an 80-year-old with dementia, yet looked like a teenager.
He now communicated using facial expressions and hand gestures, and by mid-2013, aged 16, he stopped attending school.
Finally, that October, after having a fit, Aaron was diagnosed with NiemannPick disease type C (NPC).
A rare, inherited neurodegenerative condition, it’s sometimes called childhood dementia as it has similar symptoms to Alzheimer’s.
There was no treatment, no cure – life expectancy was just 10 years from diagnosis.
‘Take him home, care for him and love him,’ the doctor told us.
We just sobbed – Aaron, 16, was unlikely to see 30.
As we processed the news, doctors ran genetic tests on me, Andrew and Taylor.
Within days, Taylor had a psychiatric breakdown.
Pacing the house, talking into thin air.
Chanting phone numbers, bank account numbers, any information she could recite. Her brain in overdrive. ‘She needs a hospital,’ Andrew called as I helped
Aaron out of the shower. Suddenly, Aaron spoke. ‘What’s happened to Taylor?’ he asked.
Stunned, I hugged him, told him we didn’t know but were going to help her.
It was like his bond with Taylor had pulled a piece of him back.
For a couple of years, Aaron regained some verbal skills, was able to speak in sentences.
Taylor spent a week in hospital, being monitored and medicated, and Andrew and I took turns sleeping on a mattress by her bed, while the other stayed with Aaron.
Then, five months after
Aaron, Taylor, then 20, got the same fatal diagnosis.
Both Andrew and I carried the defective gene.
Preoccupied with Aaron’s health, we’d missed red flags.
Put Taylor’s fading sight down to needing glasses.
‘But she knew,’ I said to Andrew.
We think it’s why Taylor broke down – she secretly knew she was struggling, and after Aaron’s diagnosis, knew that fate was hers, too. Heartbreaking.
We were distraught. The years ahead, as we slowly lost both children, seemed utterly daunting.
Then, in December 2016, I got Taylor, then 22, and Aaron, 19, on a medical trial.
Every two weeks, over six hours, they received medicine through a lumbar puncture.
It was a painful process that we just hoped would alleviate their symptoms.
After three years, we learnt Taylor had received the placebo drug for the first 12 months, while Aaron had had the real deal throughout.
A blow, but Taylor hadn’t deteriorated as drastically, as Aaron, and after the first year, she was on the same drugs as him.
The trial ended in January and, while it definitely helped and meant neither Taylor nor Aaron deteriorated any further, I’m now looking for others.
Taylor is 27, Aaron 24, and both need help to shower, dress and eat, and suffer significant memory loss.
Two carers help daily, cooking with Taylor, taking Aaron for walks, and they have physio or hydrotherapy several times a week.
Some nights, I lie awake and think about what I’ll say at my children’s funerals.
They still recognise us, and each other, but I dread the day they don’t.
My children don’t have a future, it’s beyond cruel.
Memories of badminton competitions feel like they belong to a different family.
But we’ll never give up on our kids, and will fight until the end to find a cure.
Our bright boy was like an 80-yearold with dementia