Baby born with rare genetic disorder undergoes eight surgeries in 18 months: You have to just be strong for him
At 18 months old, baby Luca has endured more than most people will in their lifetime.Australian parents Ashleigh and Cody welcomed their little boy at just 33 weeks – six weeks earlier than expected – and nothing could have prepared them for what would ensue in the following 11 months.Luca, who was born on Nov.9, the day after his mum’s baby shower, entered the world with CHARGE syndrome, a genetic condition that affects the heart, nerves, genitalia, eyes and ears.Red flags first appeared at Ashleigh’s 20 week scan when she was told there could be “a lot wrong” with Luca, but results from subsequent testing weren’t delivered until the day he was born.“It was a very horrible experience,” she told news.com.au, adding that because he arrived so early, “we weren’t sure if he would make it.”“He was in and out of hospital for a long time, he had eight surgeries,” she said.The family have been staying afloat on Cody’s income after Ashleigh quit her job to care for Luca around-the-clock, with the little guy having spent more time in hospital than out.A GoFundMe was established recently in support of the family who will undoubtedly face years of challenges in their effort to give Luca the beautiful life he deserves.“He’s had a lot of complications with his brain.
He has two shunts on each side, but they both got blocked and needed clearing, and they also replaced the valves,” Ashleigh said.“He can’t eat, so he has a feeding tube,” she added, saying he was on the waiting list for a new device that would allow him to take food in via his belly button.His short life has been punctuated by tremendous difficulties, including the time he nearly died in hospital after vomiting for five days straight.“It’s been horrible, but you have to just be strong for him.Sometimes I have my moments and ask, ‘why us?’ But at the same time, he obviously chose us for a reason,” Ashleigh said.
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