Luca came into the world early on November 9. He fearlessly fights for his life against a rare genetic condition known as CHARGE syndrome. This debilitating disorder which has forcibly exerted damage to his heart, peripheral nerves, genitalia, eyes and ears has required multiple life saving medical interventions and continued surveillance. Even though Luca is only 18 months old, he has already gone through eight surgeries. The past year has been very hard being in and out of the hospital.
The first sign that something wasn’t quite right with baby Luca came during Ashleigh’s 20-week scan when red flags were raised suggesting something was wrong. Born six weeks premature, Luca’s health complications started right from the start. The little boy has needed hundreds of hospital stays and a huge specialist team, with occupational, physical, and speech therapy.
“He was in and out of hospital for a long time, he had eight surgeries,” – Ashleigh
Luca’s condition is further complicated by the fact that he requires home oxygen and continuous monitoring at night. Mice with sleep apnea that causes them to repeatedly stop breathing altogether during sleep. He survived life-threatening episodes, one after five days of intractable emesis. Medical interventions have involved clearing blocked shunts on ipsilateral and contralateral sides and heart valve replacement.
“He can’t eat, so he has a feeding tube,” – Ashleigh
Even in the face of these challenges, Luca has been out of the hospital for seven months. The future remains uncertain. It means more brain surgeries and heart surgeries and more surgical intervention on his genitalia. The speech, mobility and vision development he’ll be able to achieve is yet to be fully determined.
“As he gets older we don’t know how he will go with his speech or mobility, and we don’t know how his vision is,” – Ashleigh
Ashleigh definitely wants to be hopeful, but realistic about what lies ahead for Luca. She’s realistic about the challenges life will continue to throw at her, but as appreciative of the joy Luca continues to bring into her life.
“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
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