Daniel Lukan and his daughter Grace, who has cerebral palsy.
Daniel Lukan and his daughter Grace, who has cerebral palsy. Mike Knott

By the Grace of God: Fathering at a whole new level

AS THE sun rises on Father's Day tomorrow, Daniel Lukan will be 1300km away from his 14-year-old son Wasyl, his 16-year-old daughter Anna and their mum Lucy.

The 48-year-old copper from South Kolan, west of Bundaberg, will be in Sydney with the family's youngest member - four-year-old Grace.

This visit to the big smoke is as far from a special Father's Day getaway as you can get. Yet it is a life-defining trip - one that could make the future so much better for the bubbly little girl with the dark sandy hair and fragile body.

Grace Lukan has cerebral palsy, a debilitating disorder that affects every part of her life.

The wheelchair-bound youngster and her dad are in the NSW capital for four weeks so Grace can have a series of intensive physiotherapy sessions that will hopefully give her muscles the ability to let her walk, albeit with a frame.

She needs as many of these sessions as she can get over the next few years because her mid-childhood years are the prime development period for her body.

Daniel and Lucy's youngest child entered the world in perfect health on December 17, 2010.

The Lukans took her home 24 hours later, joyously celebrating the new addition to the household and settling into the normal baby routines.

Three days later disaster struck as jaundice began to make its insidious way through the infant's tiny, fragile body.

Typically seen as a yellowing of the skin and whites of the eyes, the disease is caused by a bile duct obstruction, liver disease or breaking down of the red blood cells.

Grace's doctors, suspecting the latter, told her parents their precious little bundle must be flown from Bundaberg to Brisbane for life-saving blood replacement therapy.

"I was just devastated - I was gutted," Daniel says as he relives the moment he heard his daughter was sick.

"The worst I ever felt in my life was finding out that my daughter all of a sudden had to be flown down to Brisbane for treatment - I was in tears. It's gone from the best days of my life to an absolute nightmare."

WEEKEND FATHERS DAY: Daniel Lukan and his wife Lucy with their son Wasyl, daughter Anna and daughter Grace. Photo: Mike Knott / NewsMail
WEEKEND FATHERS DAY: Daniel Lukan and his wife Lucy with their son Wasyl, daughter Anna and daughter Grace. Photo: Mike Knott / NewsMail Mike Knott

Without oxygen flowing into her developing brain, Grace was teetering on a knife's edge. "The doctor came out and said we're not sure which way this was going to go," Daniel says.

"It was like everything around me had died and I was left alone. When you know your child could die, it's just a massive world of hurt.

"I went into the toilet and I just cried like a baby - I couldn't stop. It was that bad that I got the priest to give her the last rites."

Against all odds, Grace survived those horrendous first 24 hours. "She was in so much pain that we couldn't touch her," Daniel says of the following weeks.

"The only place we could touch her was the groove below the Adam's apple and a gentle sweep of the finger on her cheek. Otherwise she would scream and scream."

Slowly Grace gained strength and in mid-February the family finally returned home with the fragile bundle. But Grace's body was racked by pain for many months, making simple tasks like changing her nappy almost impossible. And further tests revealed she was profoundly deaf and had cerebral palsy. "It was just surreal - our family's foundations were shaken," Daniel says. "Grace was so helpless.

"She was screaming her guts up, she can't tell you what's going on. Her pain was just excruciating.

"In the first few years she couldn't sleep - she would sleep for two hours in a 24-hour period. It was hell on earth."

As Grace grows her hospital visits are becoming less frequent and she can now hear thanks to a Cochlear implant.

But the hard yards are far from over and even the simplest day-to-day routines turn into mammoth tasks.

"She can't use her arms, she can't use her legs," Daniel says. "She's like a rag doll that stiffens and locks up. If you put her in a seat and she is uncomfortable, she tenses up to the point of vomiting.

If she wants to watch telly I've got to put her in a seat and I've got to hang on to her head. So I'll have to sit down and watch Sesame Street - and I hate Sesame Street - hanging on to my daughter's head which she constantly moves so she can follow sound.

Grace is a smart child trapped in a body that betrays her at every turn. "She knows what is going on around her," Daniel says. "We talk to her and we can see that she understands."

It's been a tough four years for the Lukans. Lucy closed her beloved popular Bundaberg gift store after Grace came home so she could focus all of her attention on the baby.

The couple are almost broke, having spent well over $300,000 on her medical treatment. And Wasyl and Anna have had to adjust to having a sibling who will always need the lion's share of their parents' attention.

Daniel admits the journey has been so tough that he finds his high-stress job easier. In 2013, he was instrumental in saving the lives of five people when flash flooding hit Gin Gin, for which he received a bravery award.

"In the early days I went to work to de-stress because I felt like nothing could save me," he says. "I would go into dangerous situations - I became emotionally detached."

Despite the heavy load, Daniel says he wouldn't have his life any other way. "This experience has brought out my feelings a lot more," he says.

"I never used to be an emotional man but now I can really see the pain other people go through. When Grace came along my fathering was taken to a whole new level.

"I always have to think about Grace but I still have to not neglect my other kids. It becomes a tug of war trying to do the best for all of them. But I do my best to take the time to enjoy all of my kids because they grow up so fast."

To help contribute to Grace's care visit http://www.facebook.com.au/gracelukan