One Lithgow family is doing all they can to raise money and awareness about premature babies.
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Kenny Schack-Evans and his family have been tackling the 'Running for Prems' marathon challenge throughout November.
When he listening to a running podcast in his car, Kenny heard Sophie Smith's story about having triplets at 24 weeks. Her son Henry passed away after one hour, Evan lasted one week before succumbing to an infection on his brain and Jasper lived 58 days before his lungs collapsed and couldn't be saved.
"I had to pull over because I couldn't see through my tears, it was then that based on our experience with our son Jesper, I decided that I wanted to do something to help Sophie raise money through her foundation Running For Premature Babies," he said.
Kenny's son Jesper was born at 30 weeks, 10 weeks premature, and weighed just 1452 grams.
"We saw him defibrillated twice, right there in front of us, he had a lumbar puncture at three days old to determine the best way to tackle an infection on his brain," he said.
"He had a PDA hole in his heart, and like Sophie's boy Jasper, he had, and still has, chronic lung disease, with his lungs collapsing a couple of times during the 49 days he spent in the Neonatal ICU.
"To this day he has medication twice daily.
"Without the critical life-saving equipment that existed, he probably would not be here today."
Now just by looking at Jesper you can see that he is slight in stature compared to full-term kids born at the same time.
"This then plays out with other kids being stronger, faster and more confident," Kenny said.
Kenny and his wife Lisa were given pamphlets during labour, warning them about what to expect.
"These could never really have prepared us for the next few months, we lived in fear that his lungs would collapse and we received phone calls in the middle of the night asking us to come back to the ward due to changes in his condition that required critical decision making," he said.
"The scariest part about this was that friends just didn't understand what we were going through and tended to distance themselves from us."
Kenny said he would like to see a more open dialogue about having a premature baby.
"Not only about what can be done to improve their chances of survival, but also what can be done to support the parents of premature babies, as we really felt alone during those first few months of Jesper's life," he said.
In the lead up to November, Kenny and his family all decided to run the marathon and raise money.
"Jes, Nik and my wife Lisa are running theirs cumulatively across the month, and I decided to run mine on World Prematurity Day, November 17," he said.
"I run Policelink (PAL) at Lithgow, and I thought it would be cool to run the marathon around my building, the state office block in Railway Parade."
Running around the building is a 330 metre loop and so required Kenny to run 128 laps to complete the marathon.
"I ended up running the marathon in four hours and 13 minutes, which was a lot quicker than I expected, given the amount of slowing down needed to take the right corners around the building," he said.
Kenny said his colleagues really got behind him and were very supportive in both encouragement and through donations.
"As many as 14 colleagues came out and ran with me during my marathon, many of them completing personal bests in terms of their own distances, at one stage I looked behind me and counted eight people running along behind me," he said.
Lisa, Jesper and Nikolaj are still accumulating their kilometres and the family is still raising money, which will go toward purchasing equipment like humidity cribs for Neonatal Intensive Care Units.
Kenny said that he was proud of his kids for participating in the marathon.
"We've brought them up to be quite benevolent, and to see them doing this and wanting to make a difference really does make us proud," he said.
Kenny said that it was important to equip the hospitals and medical staff with the best possible equipment available.
"With one in 12 babies born prematurely in Australia that equates to a lot of parents living through pain, trauma and tragedy, and I think if we can better equip these facilities, we can give these babies a better chance of survival," he said.
"I'm doing this to raise funds to purchase life-saving equipment so other premmies have a chance at this gift of life also."