The Star: July 06, 2017

6 Thursday July 6 2017
Latest Christchurch news at www. .kiwi
The Star
News
One of a kind battler’s parents give
Family
organises
thank you
for helping
little Jonty
• By Gabrielle Stuart
JONTY WAS just 10-weeks-old
when his parents had to watch
him being prepared for surgery
for the first time.
That was five years ago, and
Sam and Maree Smolenski have
since become very familiar with
the hospital.
For the first 96 days of his
life, Jonty was kept in neonatal
intensive care. He had problems
seeing, hearing and eating, and
seemed to be hit far harder by
colds and flus than other children.
Yet the doctors could not
understand what was causing
Jonty’s problems – and it was
three years before they had an
answer, Mrs Smolenski said.
That came almost by chance,
she said.
Jonty has trichothiodystrophy
– a recessive genetic disorder so
rare he is the only person in New
Zealand currently diagnosed
with it.
But a geneticist at Christchurch
Hospital had seen cases
before, and recognised the symptoms,
including Jonty’s distinctive
brittle hair, she said.
“He has never ever had a hair
cut. There is a guy on Home
Alone who gets his hair singed,
and he’s left with just knobbles
around his head. When Jonty
SUPPORT:
Five-year-old
Jonty has a
laugh with his
mum Maree
Smolenski as
he finishes
school for the
day.
PHOTO:
MARTIN
HUNTER
was a wee baby in neonatal care
he looked like that. His first lot
of hair just rubbed right off and
knobbled up around his head,”
she said.
Although they finally knew
the cause of their son’s problems,
it came with bad news – it was
untreatable, and many children
with the condition died young,
she said.
“It was quite a shock. We don’t
know how long we’ll have with
Jonty. Every winter there’s a risk
he might get an illness he doesn’t
recover from,” she said.
Spending so much time in hospital
away from their two other
children, Lachie, 7, and Ruby, 3,
made it harder, she said.
But that was when the community
rallied.
Mr Smolenski is a harness
racing trainer and driver, and
comes from a racing family –
his grandfather was driving
and training legend Jack
Smolenski.
The racing community rallied
last year to raise more than
$75,000 for the family, with even
world driving champion Dexter
Dunn wearing special racing
colours in Jonty’s honour as a
fundraiser.
That meant the whole family
could go to international conferences
in the United States last
year and again this year to meet
with specialists and with other
people who have the condition,
Mrs Smolenski said.
JOIN US ON CHRISTCHURCH CASINO’S
starts THIS
FRIDAY!
come in
& get on
the road.
30 VICTORIA ST
DRESS CODE APPLIES | ROAR
OVER $250,000 WORTH
in cash & PRIZES TO BE WON!
ENTRY TICKETS ARE FREE Terms conditions &
apply.
FOLLOW US
ON THE
ROAD2ROME.CO.NZ