Chat – 25 July 2019

Likeme,Elijah

hasApert’s

I givehimthe

bestlifepossible,

experiencing

newthings

A

g n ticconditioncaus d byth mutationof

a specificgene,Apertsyndromeaffectsbone

growth,andcanbepassedfromparenttochild,or

candevelopsporadically.It canleadtomalformation

oftheskull,face,fingersandtoes– and,inmany

cases,learningdifficulties.Inseverecases,it can

alsoaffectbreathing,causeheartproblems,put

pressureonthebrainandaffectvision.

Babiesbornwiththesyndromehavedefined

characteristics,suchasa shorterskullfromback

tofront,widerfromsidetoside,bulgingeyesset

furtherapartanda largelowerjaw.

Whatis Apertsyndrome?

21

• to separate his thumbs and
  his forefingers. He also had an
  op to fix his twisted bowel.
  It was tough, but Elijah
  was tougher.
  In May 2007, he had more
  surgery to relieve pressure on
  his brain and give it more
  space to grow.
  Doctors sliced him from ear
  to ear, inserted three metal
  rods in his bones.
  Every day, they turned

the rods to expand his skull.

It went well – and after two

weeks, we went home.

With his biggest surgeries

behind him, I imagined Elijah

living a full life.

‘I bet he’s going to be fiercely

independent, like me,’ I told

my friends.

But, unlike me, he wouldn’t

have to be. He’d always have

somewhere to call home.

Only, by August, the wound

from his skull op oozed pus.

Tests showed Elijah had

contracted an infection, and

he was put on antibiotics.

Over the next two months,

I watched, helpless, as his

condition deteriorated.

Doctors removed the rods,

hoped it’d help clear the

infection, but his skull started

leaking fluid.

Elijah went from bubbly and

alert to lethargic, quiet.

In the October, his

temperature spiked and he

had a seizure. Doctors rushed

him to theatre.

Then, two hours later,

another horrific bombshell...

‘The infection has spread

to Elijah’s brain,’ the surgeon

told me.

‘What does that mean?’

I asked.

They tried to reassure me –

but looking at Elijah, I knew.

Motionless, unresponsive, his

head bandaged – my energetic

baby had disappeared.

The next week, I learnt the

extent of Elijah’s condition.

‘Elijah contracted

pneumococcal meningitis.

If he pulls through, he’ll be

severely brain damaged,’ the

doctor said.

The next few months

were a living nightmare.

The brain damage

impacted Elijah in every way.

He was non-verbal, with

no movement, a feeding tube

in his nose.

For the rest of his life.

At home, he needed

round-the-clock care.

I struggled.

Even with Apert syndrome,

this wasn’t the life I’d hoped

for him.

But on New Year’s Eve

2008, a flick switched.

I realised I needed to be

strong, for Elijah.

Do whatever it takes to

give him the best life possible,

I thought.

Two days later, I found

a place at a children’s

rehabilitation centre.

Elijah had physio, speech

and language therapy.

After years of dedication,

perseverance, I saw glimpses

of my boy.

He started using facial

expressions, frowning, rolling

his eyes, sighing.

You could tell when he

was happy, and he adored

the nurses.

He’d make eyes at them,

turn on the charm.

‘You flirt!’ I’d giggle.

He still has seizures, but

Elijah, now 13, loves hip-hop

music and audiobooks –

especially David Walliams.

He’s happiest swimming or

watching superhero films.

I worry about the future,

the uncertainty of his

life expectancy.

So I’ve made a bucket list

• Florida, Disneyland Paris,
  the aquarium and the theatre.
  We’re slowly ticking
  things off.
  Having Elijah has been
  the making of me.
  I feel blessed.
  I just hope he knows just
  how treasured he is.
  l See elijahshopeforapert.org