By Ewen McRae
Michael and Frances Farrugia are used to facing adversity.
They’ve faced it just about every day since their daughter, Sarah, was born 11 years ago –and with every new challenge they have found a way.
But now the Kurunjang couple and their family need some help.
Sarah came in to the world as a healthy child, but soon after things began to change and life has never been the same for Michael and Frances and their children.
“It was about six months after she was born … she started to develop infantile spasms,” Michael said.
“So we were at the Royal Children’s Hospital where they tried inoculating her with steroids to break off these seizures, but sadly it never changed and it blew into full-on epilepsy.
“From there she digressed. She lost whatever she had at the time and she kept on going backwards.
“Over the years it’s also meant she doesn’t have just one condition – she has cerebral palsy, a rare strain of epilepsy, gord, dyskinesia as well as being cortically blind.”
Sarah can no longer orally eat and drink. She is fed through a tube to her stomach and her parents have to keep a close eye on her to ensure they are ready if a seizure strikes.
All this means a huge strain on the family, which includes older brother Jesse, 13, and youngest Jonah, 7.
If that wasn’t enough, Frances also has treatment for MS, while Jesse has recently been diagnosed with high-functioning autism.
“We’re so used to it now, but we are always on alert,” Frances said. “It’s very taxing at times, but we’ve got an OK handle on things with Sarah at the moment and we want to make sure that our son [Jesse] doesn’t get left behind in it all.”
The family will soon receive a seizure dog, that will be Sarah’s constant companion to alert her parents if there is a seizure and also comfort Sarah at the time.
The biggest current battle for the family is its desperate need for a new car, with its current vehicle unsuitable.
Both Michael and Frances have had to stop working to take care of Sarah, placing a financial toll on the young family.
“It’s [the car] been something that’s been in decline for some time, to the point that sometimes we turn the key and the car won’t start,” Michael said.
“Having a wheelchair means there’s only so many cars that are suitable … then you have to convert it so the wheelchair can fit in, so the cost is quite significant.
“With hospital visits, and Sarah spends some time in hospice care, as well as just normal family outings, we really do need a new car.”
Through all the ups and downs the family has stuck together.
“When you have a disabled child in the family, you can’t hide it, but you try to be as normal as you can,” Frances said.
Michael added: “You can’t help but go a bit crazy, but I say that with a smile. We’re constantly tired, and sometimes you do just want to shut down, but we’re always quietly optimistic.
“We always find that no matter how bad something gets that we always manage to get through it together. I think that’s why we can still smile.”
A friend of the family has set up a GoFundMe page to help raise funds to go towards a car for the family: bit.ly/2yyQdc1
