Ryder has been through a difficult two years. In that time, he’s been diagnosed with a rare, degenerative eye condition and had to change schools because he was so unhappy. Upon hearing his story, Satan’s Little Helper knew we had to do something to help brighten his day.
‘Best disease’ is a type of macular dystrophy caused by a genetic fault, which results in degeneration of a person’s sight until it can be difficult to read.
Unfortunately, there’s no cure and individuals progress through the five stages of the disease at different rates. It’s also very rare, so finding a support network for affected children and parents is difficult.
Seven-year-old Ryder was diagnosed two years ago – a blessing in disguise, says his mum Janelle.
“When we found he had Best disease, Ryder was really struggling in school and his anxiety was sky high. We were trying to figure out how to help him and understand what was causing his struggles. At least now we know why.”
Making progress
In the past 24 months, Ryder has changed schools, which has improved his confidence levels. He is also able to pay more attention in class, due to an increased understanding of his condition, and is allowed to keep his fidget toys with him.
“The toys really help when he’s feeling anxious and his anxiety has come down a lot as a result of those few things,” says Janelle.
Hurry up and wait
Because Best disease is so rare, – affecting around 2,000 people in New Zealand – very little is known about it. The only thing medical professionals can do is to conduct regular for eye tests; Ryder has one every six months.
“There’s not a lot of information out there! We’re hoping he’ll make it through school and have a long life before it starts to affect him too seriously,” says Janelle. “The lack of available information is partly why I nominated him for Satan’s Little Helper – I wanted to help spread the word of the condition.”
As there’s not a lot that can be done for his eyesight, Satan’s Little Helper decided to do something to create some positive memories for Ryder and his family by sending them to Rainbow’s End for the day.
A great day out!
“We found out about the trip in winter and waited a few months for better weather before we went,” says Janelle. “Ryder had been so excited for so long and was super happy when the day finally arrived.
“We went on the log flume three or four times; he loved it so much! He really liked the bumper cars as well, which he rode with his four-year-old brother Curtis.
“This year has been really tough on us, so it was nice to put our worries aside. Ryder got to have new experiences and a delightful day out, which was priceless for us to see. Watching your kids get that happy glow in their eyes when they’re doing something that makes them happy makes all the hard times worthwhile.”
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