Hadley Christian is described by his parents, Logan and Catherine, as a “typical 10-year-old boy who loves playing sports, especially rugby and basketball”.
However, unseen to most are the interruptions to this ‘typical life’ with operations, eye drops and time away from school or his mates attending medical appointments.
We are appealing for your support to create awareness of congenital glaucoma, a rare, incurable condition, presenting in babies or young children with little or no warning.
This is an update to Hadley’s story, first told in 2014 by the New Zealand Herald. His family spoke then of tears and sleepless nights after their special little boy, their firstborn, was diagnosed with a glaucoma. By the time Hadley was 11 months old, he had endured 16 operations on his eyes.
At one point, he had to have eye drops put in 18 times a day.
His parents noticed his eyes were very watery when he was about 9 weeks old. Their GP tried topical antibiotics, but after four days with no change, he referred him to a specialist, who thought the baby’s eyes were unusually large, which can be a sign of the disease in children, and tests showed very high pressure in his eyes.
Logan said hearing Hadley’s diagnosis was heartbreaking. “It’s taken all this effort to get him into this world through IVF and then to be told that he’s got a condition that’s incurable and he could go blind, it tears you to pieces.”
Hadley had the first of his 16 surgeries when he was 10 weeks. The first two didn’t work, so a different procedure, a trabeculectomy, was done. “That worked for a week, but then the eye pressure went back up. Hadley was in and out of hospital for two months for surgeries to make tiny adjustments”. Hadley now had minor visual impairment and would probably need glasses. The high pressures caused his cornea to split in both eyes, which meant he was very sensitive to light. Since then he has had over 40 surgeries and procedures, since that early trabeculectomy, all with a general anaesthetic, including a stent in his right eye.
“As time went on, it was harder to get Hadley to comply with invasive procedures, IVs, anaesthetics and waiting for long periods in public waiting rooms was extremely stressful.”
Fast forward to our ten-year-old Hadley, who tackles his glaucoma with the resilience and just-do-it attitude of an All-Black. At school, his teachers are guided by the Blind and Low Vision Education Network (BLENZ) to sit him away from light, and near the front of the class, although Hadley is confident to ask if he needs something different. On the rugby field, he has the benefit of a supportive team and some pretty cool goggles. As Hadley progressed to tackle rugby, which he has been playing for three years, Logan & Catherine imported a pair of rugby goggles, as worn by All Black Arde Savea, in the 2019 Rugby World Cup. These were initially fitted with a tinted insert, then Catherine, had a number 8 wire moment, dismantling a pair of ski goggles and inserting the tinted lens to reduce the light & glare.
Congenital glaucoma is rare, extremely confronting, and challenging for parents and their children. Hadley’s family is sharing their story to create awareness and raise funds for new resources to support parents and their children diagnosed with glaucoma.
When you donate to Glaucoma NZ, or leave a gift in your will, your generosity will have an impact far beyond the science in progress right now and bring hope that in Hadley’s lifetime we are closer to a world free from blindness and low vision.