Jodie took her daughter to the optician for a routine check-up. But the test led to a devastating diagnosis…
Twirling around in a yellow dress, I heard a little voice begin to sing enthusiastically.
After that song had finished, she struck up another tune straightaway.
Dressed as Belle, my youngest daughter Bobbi was warbling away to her favourite songs from Beauty and the Beast.
She loved characters from Disney films, and had a particular fondness for Anna from Frozen.
‘She’s got red hair like me,’ she said proudly, holding up her doll.
Bobbi was seven years younger than her big sister
Demi, and three years younger than her brother Ritchie.
My hubby Michael and I, adored watching Bobbi
dancing around in the Disney princess costumes.
But once, mid-song, she stopped singing and went
off to the toilet.
When she returned, she resumed singing.
However, just a short while later, she left the room, and I heard the toilet flush again.
Concerned, I began to take note of when she went to spend a penny.
And she was often thirsty.
‘Can I have another one, Mum?’ she’d ask, not long
after she’d already had a drink.
Bobbi was an active, energetic
girl, but she became more tired, often yawning heavily well before it was time for bed.
Sometimes she’d even doze off.
I took her to the GP, and a blood glucose test was carried out.
‘Her levels are too high,’ the GP said. ‘You need to take her straight to hospital.’
Alarmed, I watched as she had more tests at the hospital.
Just hours later, a consultant told us that Bobbi had type 1 diabetes.
My head spun.
That explained Bobbi’s frequent trips to the toilet and her increasing thirst.
We stayed in hospital to learn how to carry out the insulin injections which Bobbi would need every day.
She’d just turned seven.
Patiently, Michael and I explained to her what was wrong with her, and why she needed to have the injections.
Our girl took it in her stride, and we all gradually became used to her new daily routine.
Months later, Bobbi and I both went for an eye check-up at the opticians.
‘There’s a problem behind the eye,’ the optician said after Bobbi’s test.
My heart thumped in fear.
My poor girl had already been through so much after the diagnosis of diabetes.
More tests
were carried out, this time at Moorfields Eye Hospital in London, over three days.
The specialists found that Bobbi had optic atrophy. It meant that the nerve at the back
of the eye that sends signals to the brain
was becoming thinner.
‘She’s losing her
sight,’ the consultant
said. ‘I’m sorry, but she will eventually lose it completely.’
I was heartbroken.
‘How will she manage? How will we tell her?’ I wept to Michael.
But before we had time to even consider what we should do, a paediatrician told us he thought that Bobbi could be suffering from Wolfram syndrome.
I blinked in bewilderment — I’d never heard of it.
The paediatrician didn’t say any more but, when I got
outside, I began to google.
As I scrolled, tears began to stream down my cheeks.
Our precious girl was likely to lose her sight and go deaf.
She could have difficulty swallowing, breathing and suffer balance problems.
And then followed the harrowing realisation which tore my heart to pieces… We may lose her by the age of 30.
My lively girl, so full of life.
There was no cure.
Soon the diagnosis of Wolfram syndrome was confirmed.
It was a rare genetic disorder, only affecting one in half a million children in the UK.
We’d had a series of diagnoses that left us reeling, each one worse than the one before.
When Bobbi was eight, we
sat down with her to tell her she had Wolfram syndrome, but didn’t go into any details.
‘But you’re not to worry because Mummy and Daddy are here, and we will always look after you,’ I said, smiling at her reassuringly.
She nodded, unperturbed.
But the enormity of what was going to happen to Bobbi began to
overwhelm me.
I’d already suffered the devastation of losing my mum and stepdad five years earlier. And I was next of kin to my brother who was autistic and non-verbal.
The pressure took its toll
on me. I didn’t want to eat anything, and would push
my plate away.
I found it hard to speak, and eventually fell silent completely.
I was admitted to hospital and stayed there for a week.
Doctors told me I’d had a mental breakdown and was in complete shock.
They diagnosed me with ADHD, which explained the total overload of my senses.
I returned home once I had been stabilised with medication and had come to terms better with the situation.
I left my job to become full-time carer to Bobbi.
As I recovered, a determination began to grow inside me, and I thought about how to make fabulous memories with Bobbi.
I wanted to see the light shining in her eyes before it was too late.
'She's losing her sight'
What would give her the greatest happiness? I thought.
Suddenly, an idea flashed through my mind.
‘Disney World,’ I said firmly
to Michael.
Our gorgeous girl deserved the chance to see
her favourite characters.
‘I want to take her there while she can still see,’ I said.
But as we sat down and worked out what it would cost, a gloom descended.
I’d given up
my job and Michael had taken time off work to look
after me and
the children.
We simply couldn’t afford the trip. It would take us years to save up — years that Bobbi didn’t have.
‘We could try fundraising?’ I suggested.
So I sat down with my friend Caeleigh, and we made a GoFundMe page called Bobbi Bewley’s Wish.
We want to give Bobbi some amazing memories, we wrote.
The response was wonderful.
I couldn’t believe it as donations began to come in.
Family, friends and strangers had all been so moved by Bobbi’s condition,
and desperately wanted to give her a fantastic time.
I was overwhelmed by their generosity.
And it wasn’t just money.
A lady offered free piano lessons to Bobbi when she read of her plight, and another offered her free singing lessons.
Then, as the donations continued to roll in, I received a message.
I can give you the use of a villa in Florida.
Tears of happiness spilt out.
‘We’re actually going,’ I said to Michael.
When we told Bobbi, joy shone from her eyes.
She understands now that she will eventually lose her sight.
It has already deteriorated,
and her balance is affected — she falls over often.
We have to cut her food up into tiny pieces, so she doesn’t choke. Yet even doing that isn’t enough.
Her gag reflex has gone,
and Michael once had to perform the Heimlich manoeuvre when some food scarily got lodged
in her throat.
She also suffers from aches and pains in her legs.
Yet, she’s so happy — I’m in awe of how strong she is.
She’s having touch-typing lessons at school.
‘She’s great at it,’ says her teacher.
And she continues to sing along with all her favourite
Disney songs.
Despite the creeping intensity of the condition, her enthusiasm for adventure has not dimmed.
‘I want to see the Northern Lights,’ she told us.
And we’ll try to make her dream come true.
But first we’re going to Disney World in Orlando, later this year.
The whole family will make amazing memories.
My perfect princess is going
to meet the Disney princesses she adores.
Jodie Bewley, 37, Basildon, Essex
If you’d like to donate to Bobbi’s fund, visit gofundme.com and search for ‘Bobbi Bewley’s Wish’.
For more information about Wolfram syndrome, visit wolframsyndrome.co.uk