Chat – 25 July 2019

Wejust

wantour

littleboy

tobe

happy

Wecan’t

imaginelife

withouthim

A selfiewithmy

preciousboy

M?’

e we going

57

or a lorry driver.

He’d never learn to drive,

never fall in love, get married,

have his own family.

I felt numb.

Just weeks earlier, Francis

had been running around like

any other boy.

How can he be so poorly?

Francis was given hormone-

replacement medication,

but there wasn’t much more

doctors could do.

Back home, the devastating

diagnosis hit us like a ton

of bricks.

‘What are we going to tell

Francis?’ I sobbed to Darren.

Our boy knew he was ill, but

we didn’t have the heart to tell

him just how sick he was.

He’d always been such

a happy child.

Why ruin his remaining

years by telling him the

devastating truth?

So, we decided not to tell

him he’s dying.

I know some people might

disagree with our decision.

But we just want

our little boy to

be happy.

We don’t want

him to live in fear.

Instead of

dwelling on the

negatives, we

started thinking

of all the things

we’d like to do

as a family.

Francis said he

wanted to go to Benidorm, so

we booked a family holiday.

We also took a trip to

Legoland and had a day out

at a steam-engine museum.

We dreamed of taking

the kids to Disney World in

Florida, so applied to Make-a-

Wish to make Francis’ dreams

come true.

We were overwhelmed when

the charity granted our wish.

We go on 18 November this

year and can’t wait.

And when the world felt too

much to bear, friends and

family rallied.

They raised money so

we could make even more

special memories with our

precious boy.

On my darkest

days, people’s

kindness kept

me going.

As the weeks

passed, I could

see Francis

deteriorating.

The disease took

hold far quicker

than anyone

had expected.

In a matter of weeks, Francis

struggled to feed himself,

couldn’t see as well.

I couldn’t take my eyes off

him, looking out for signs of

him getting sicker.

Lilly became a little mother

hen, guiding Francis to his toys.

Watching my two babies

playing together, I could

feel my heart shattering

into a million pieces.

I couldn’t imagine what

our lives would be like

without Francis.

As it’s genetic, Lilly will soon

have to be tested for X-ALD.

We have a long road ahead.

At times, I can’t believe

what’s happening to us.

But, for now, I just want to

treasure every moment with

my precious little boy.

l To donate, visit justgiving.

com/crowd funding/r-bower