Chat – 25 July 2019

He’lllose

theability

towalk,

talk,hear

andsee

Fullsteam

ahead,

withDarren

AtLegoland,

withLilly

TO TELL HIM

‘What are w

P

olicecars,fire
engines,aeroplanes,
helicoptersand
steamtrains...
Mylittleboywas
obsessedwiththem.
‘I wantto bea lorrydriver
whenI’molder...anda
firefighter!’Francistoldme
asherevvedhistoycars
overthesettee.
‘Goodplan,’I grinned.
It waslastDecember,and
Francis,then6, hadalways
beenobsessedwithvehicles.
Theyallfascinatedhim.
Hewasa typicallittleboy.
Fullof energy,rarelysatstill.
Buteverythingchangedthe
followingmonth,whenmy
partnerDarren,52,wentto
pickFrancisupfromschool.
‘Histeachersaidhe’snot
beenhimself,’hetoldmewhen
theygothome.
He’dseemeddeliriousand
hadbeenbumpingintothings.
Concerned,wetookFrancis
straightto ourGP,whosent
usto A&E.
ArrivingatBlackpoolVictoria
Hospital,I wasbesidemyself.
Franciswasexhausted.
Didn’tseemto knowwhere
hewas.
Medicstestedhimforsepsis
andmeningitis.Butafterfour
days,doctorscouldn’tfind
anythingwrong.
Weweresenthomewith
someantibiotics.
Backhome,I kepta closeeye
onFrancis.
Hewasconstantlydelirious,
tooexhaustedto playwithhis
littlesisterLilly,5.
WORDS:‘Somethingisn’tright,’

SASKIA

MURPHY,

LUCY

BRYANT.

PHOTOS:

SWNS

WhyI can’ttellmyboy the

heartbreakingtruth...

DemiMacfie,27,Blackpool

DESPERATELY SAD

56

I said to Darren.

We took him back to hospital,

where doctors did scans.

Then...

‘We’ve found abnormalities

in Francis’ brain,’ the

consultant said.

Francis needed further tests,

so we were transferred to Alder

Hey Children’s Hospital.

In the back of the ambulance,

I stroked Francis’ forehead

while he slept.

He looked so poorly.

Arriving at Alder Hey,

Francis was

sedated

and sent

for an

MRI

scan and

lumber

puncture.

Sitting

at his

bedside,

Darren and I felt so helpless.

But relief washed over us as

soon as Francis opened

his eyes.

‘Mummy,

I’m hungry.

I want pizza,’

he said groggily.

Our little boy

was showing signs

of being back to

his normal self.

But our

moment of joy

was short-lived.

Soon after, the

consultant told us what he

thought was wrong.

‘It looks like it

could be x-linked

adrenoleukodystrophy,’

he said.

Stunned, I listened

while the doctor explained it

is a genetic disease, also known

as X-ALD, that attacks the

nerve cells

in the brain.

In time, Francis

would lose the

ability to walk,

talk, hear and see.

And, eventually,

the deadly disease

would claim my

little boy.

Doctors gave

him two years

to live.

It was too much to take in.

Francis would never

grow up to be a firefighter

Francis enjoyed

his 7th birthday

in Benidorm