Chat – 01 August 2019

S

everecombinedimmunodeficiency(SCID)is

a groupofrareinheriteddisordersthatcause

majorabnormalitiestotheimmunesystem.

Therearedifferenttypesofthecondition,which

leadstoa greatlyincreasedriskofinfectionand

othercomplicationsthatarelife-threatening.

ThefirstsymptomsofSCIDusuallyarisewithin

thefirstthreetosixmonthsoflife,withbabies

sufferingfrequentinfections,aswellassevere

andpersistentcoldsandcoughs.

Infantswiththeconditionneverusedtosurvive

theirfirstyear,butnowtreatmentis availablethat

canreducetheriskofseriousinfectionand,in

somecases,evencurethedisorder.

What is severe combined

immunodeficiency (SCID)?

21

pulling herself up and wiggling
her bum in delight when
Peppa Pig was on the TV.
I was overjoyed.
Finally, in November 2018,
she was well enough to be
discharged from hospital.
Straight after leaving,
I pushed her pram to a park.
Lifting her up, I pointed
upwards to the sky.
‘Can you see the bird?’
I smiled happily.
Arriella’s face lit up
in complete amazement.
She’d only ever seen birds
on TV until that moment.
And, when Christmas came,
she ripped open her presents
under the tree.
Grinning widely, she bashed
noisily on her new tambourine
and toy keyboard.
Finally, we could join in with
the family celebrations.
‘But still no kisses on her
face, please,’ I told relatives
apologetically, as they scooped
her up for cuddles.
I just didn’t want to risk it.
It was still a magical time
for us all, though.
In January 2019, just before
her first birthday, she smiled
at me and said, ‘Mumma.’
What a feeling!
However, weeks later,
Arriella developed a lung

infection,

followed by a

tummy bug.

‘It’s back, it’s happening

again,’ I said in a panic.

Sure enough, blood tests

confirmed that Arriella’s

immunity had diminished.

So I packed our things and

we returned to Great Ormond

Street Hospital.

The doctors promised to find

a match for another bone-

marrow transplant – only

this time round, Arriella also

needed to have chemotherapy.

Once a match was found, in

April 2019, Arriella had chemo

through a line in her chest.

It made her sick, exhausted.

Within days, her soft, fluffy

hair fell out in clumps.

‘Your very first haircut,’

I murmured, as I sadly shaved

her little head.

The following week, she

had to have her second

bone-marrow transplant.

Now we’re waiting for her to

develop an immune system.

If it doesn’t work, she may

not survive.

Yet my little fighter, now

18 months, is always smiling.

For now, at least, her life

exists inside a hospital room.

But I hope with all my

heart that she’ll feel sunshine

on her face one day soon.

l For more on Arriella’s

story, visit her Facebook page,

‘Girl in the Glass House’.

Despite being so

poorly, Arriella

keeps on smiling

I had to wear a

mask and gloves

to be around her

Arriella is

our little ray

of sunshine