NORTHSIDE
toddler Elie Madden has been offered a flight to the US on the Government jet later this
month where she is to undergo pioneering surgery.
Little Elie was born with a gap between her oesophagus and her stomach, but her
parents hope that the groundbreaking procedure to be carried out in Boston will
give her a normal quality of life.
The
one-year-old will be accompanied on the flight by her twin sister Emie, her
parents, her grandmother and her medical team armed with a range of vital
equipment.
Speaking to
Northside People, her father Eddie Madden (41) explained that the use of the
Government jet is not a luxury but a necessity.
“Elie can’t
take a normal commercial flight because of all the equipment she needs to be
able to breathe and eat,
? he said.
“We will have
her doctor, nurse, carer and a technical engineer on board as well. The
Government jet has to do a few test flights before the trip to make sure
everything works smoothly, because all the equipment is battery-powered.
?
It’s been a
long road for the Madden family, who live in Santry Cross, since mum Esti (32),
originally from Poland, was diagnosed with a problem pregnancy nearly two years
ago.
The twins were
born by emergency casearean and Elie had to spend the first nine months of her
life at Our Lady’s Children’s Hospital in Crumlin.
The brave
little girl suffers from a range of conditions including Tracheo-Oesophageal
Fistula with Long Gap Oesophageal Atresia. In other words, there is a gap of
about six centimetres between her oesophagus and her stomach, which means she
cannot eat, drink or swallow unaided.
“She has a tube
in her throat constantly to stop her trachea collapsing, and she is fed through
a peg in her tummy,
? Eddie explained.
Elie regularly
needs a ventilator to clear her airways, and has undergone a number of heart
operations. But her parents say that despite her difficult life, Elie is a
remarkably bright and cheerful little girl who sleeps soundly through the night
and loves playing with her sister Emie.
“People warned
us when we were having twins that they were such hard work, but both girls are
fantastic and we feel so blessed,
? Eddie revealed.
“They are very bubbly and
giggly and sleep round the clock.
Emie senses
that there’s something wrong with her sister, and doesn’t touch any of the tubes
near her, but they just get on really well together despite having spent many
months apart.
?
Emie is now
living at home with her family, thanks to HSE carers who look after her 16
hours a day. The operation in the States is also being covered by VHI insurance
and the HSE, for which the Maddens are grateful.
“I have to say,
the HSE has been fantastic.
? Eddie stated.
“The operation in Boston was
originally going to cost 1.2 million dollars, but the HSE negotiated on our
behalf down to about
?¬850,000. The VHI is paying
?¬100,000 towards the cost, and
the HSE is paying for the rest.
?
However, the
Maddens still need financial help to cover the cost of their flights while they
look after Elie when she recovers from her operation in the States.
Elie will be
put into an induced coma for over three weeks, while doctors use a technique
known as the Foker Process to stimulate the growth of her oesophagus.
The surgery is
scheduled for December 2, but the whole procedure and aftercare will take
between three and six months.
“My wife, her
Polish mother, and Emie will all be living in Boston all that time,
? said
Eddie, who will be staying in Dublin where he works as a chef at Shanahan’s on
the Green.
The Maddens
have launched
‘Operation Elie’ to raise money to cover their living expenses
while in Boston, with a target of
?¬30,000.
Thanks to
heroic fundraising efforts by friends and family in Dublin and Poland, they are
up to about
?¬25,000 so far.
“Our friends
have been unbelievable and we are so, so grateful,
? Eddie said.
“They have just
been so supportive from the start. The moment we decided to go for this
procedure in Boston, they set to fundraising with amazing energy.
“There have
been coffee mornings, marathon runs, a sponsored fast and charity nights, most
recently in Hedigan’s Pub in Phibsboro.
“We are
fundraising to cover our living expenses, but we’re not looking for luxury. We
just need a basic apartment near the hospital in Boston, and any surplus money
raised will be given to a similar charity.
?