David’s bubbly daughter suddenly began to struggle with everyday tasks. Now, he’s fighting for his precious girl with everything he has...
Pigtails flying, my daughter whirred around, her feet going faster and faster.
‘Come on, Daddy,’ she ordered, gesturing at me to join her.
I grinned at her.
How could I turn down her command?
Soon, I was up on the dance floor and we were spinning around together.
Me and Khloe, four, were in one of our favourite places – a restaurant where infectious upbeat Latin American music blared out and brought customers to their feet.
When the song finished, the pair of us flopped down in our seats to catch our breath.
Khloe and I were a tight-knit team.
I was a single dad – we’d been on our own since she was two when her mum had left us.
I had a grown-up daughter too from a previous relationship, but she now had a family of her own.
At home, Khloe’s energy never stopped.
‘I’m going on the trampoline,’ she said, and soon I could see her bouncing up and down.
And at weekends, we often went to our local woodland park.
‘Watch me, Daddy,’ she yelled as she ran along the trail.
Afterwards, she said sternly, ‘Now, I want to go to McDonald’s.’
I smiled at my bossy girl – she never shied away from saying what she wanted or thought we should do.
Chuckling, I said, ‘OK, then, let’s go.’
Pitching up at McDonald’s, she was soon tucking ravenously into chicken nuggets.
Once we were back home, Khloe settled down to watch her favourite Disney
film, Lilo & Stitch.
‘Sit with me,’
she said.
But shortly after her sixth birthday,
I noticed she wasn’t her normal, exuberant self.
Her balance seemed to be
off kilter when she was running and jumping.
Weeks later, her teacher asked to speak to me.
‘Khloe couldn’t open her backpack today,’ she said, with a worried look.
She described how she’d been bent double at the waist as she tried to open the bag, but her fingers merely fumbled with the straps and couldn’t undo them.
The teacher had had to step in to help her.
What on earth is wrong with my girl? I fretted.
Watching her move more closely, I noticed she was much more hesitant in her actions.
Then, something caused further alarm…
‘My head hurts, Daddy,’ she said.
Her headaches grew worse and worse.
Worried, I took Khloe to hospital.
She underwent countless tests,
but doctors were unable to find out what was wrong.
Then, finally, they had answers.
‘We know what’s wrong with Khloe,’ one doctor said.
I felt relieved.
Surely now they’ll be able to help her, I thought.
But their faces were sombre.
A consultant explained that Khloe was suffering from leukodystrophy, a rare genetic disorder which affected the brain and nervous system.
‘There is no cure,’ he said.
My heart constricted in fear. I listened as the consultant said the condition caused a progressive loss of neurological function.
Next, they outlined what would happen to my girl. They could see that she was losing the ability to walk and talk.
She was ageing backwards.
Eventually, she would lose her sight. It was too much to bear.
But worse was to follow from the doctors.
‘It’s unlikely she will live more than a few years,’ they said.
The news was just nightmarish.
‘How’s this happened?’ I wept.
Up to the age of five she’d been a normal girl, who relished running in the forest and dancing.
‘Is there nothing that can be done?’ I begged. ‘Surely someone can help her?’
But her prognosis looked hopeless.
I felt Khloe was too young to understand, so I didn’t tell her about the disease.
But she wondered why she couldn’t run and play with the other children.
‘You might have to use a wheelchair,’ I said.
Another girl in her class used
a wheelchair – Khloe was unfazed when I told her she would be like her classmate.
My girl needed me, so I began to find out everything I could about the deadly condition.
Khloe had been diagnosed with metachromatic leukodystrophy (MLD).
It was a genetic disease – both me and her mother must have been carriers, although neither of us was affected.
I learnt that the disease caused a loss of a specific enzyme which then resulted in the nervous system being attacked.
As I read more about it, a flicker
of hope ignited
inside me.
Although there
was no cure, stem cell treatment existed, which, in some cases, could halt the progression of the disease.
There were examples of children who’d survived into their 20s because they had benefited from it.
I would do anything for my darling Khloe.
So I had to work out how I could get the treatment for her.
Taking out my health insurance policy, I made a call.
‘I’m sorry, but that’s not covered,’ an employee said, after I’d explained Khloe’s condition.
My heart sank.
I would have to pay for it.
But the cost was astronomical – it was more than £3m.
‘How can I begin to raise that amount?’ I sighed.
But I had to try.
‘You’re my life,’ I whispered to Khloe.
Friends set up a GoFundMe for her, while I began to find out which hospitals could offer the specialist treatment for my girl.
‘Please help me,’ I begged one.
But after they looked at her notes, they replied, ‘Sorry, but we don’t think we can help her.’
Crushed, I tried another. But I got the same answer.
Meanwhile, her GoFundMe donations were going up and up.
I was so touched by the kindness of others, but I knew the sum needed was still so far away.
By now, Khloe had difficulty walking and needed strong lenses in her glasses to be able to see.
But I was determined that we would mark the day when she graduated from nursery school, adorned in her blue cap and gown.
I stifled
my tears as Khloe smiled from beneath her hat.
Would this be the last milestone
we’d experience together like this?
Deep down inside me, a resolve began to grow.
I had to try everything
I possibly could.
Back I went to more hospitals. But still the answer was ‘no’.
However, I did learn that a conference was to be held by experts in leukodystrophy in a few months’ time.
I travelled to it and spoke to some of the doctors.
We lived in America, and several of the experts told me that getting treatment in Europe might be a better bet because their methods were more advanced.
The cost would be cheaper as well.
Now, I’m contacting hospitals in European countries and China too, and am trying to keep hopeful.
Khloe is seven and can’t walk on her own any more, but she can pull herself up and use a walker.
Her voice is much lower in volume too.
My girl might be ageing in reverse before my eyes, but
there is still a glimmer of her personality.
‘No,’ she said stubbornly when I tried to dress her in something she didn’t like.
Still my bossy girl, she made
it perfectly clear which frock she wanted to wear!
But it’s incredibly cruel and hard seeing her deteriorate before my eyes.
And I can’t bear to lose her.
I’m desperate to find a way
to stop the progression of this horrific disease.
I’ll never give up fighting for my little girl.
David Garcia, 60, Nashville, US
