When little Saryn Semmens was born with a fused skull, surgeons had to operate to put a plate in her head to make room for her brain to grow. When she was 10 months old her mum Kerry and dad Steve suspected something else was wrong. Saryn wasn’t doing the things the other children were doing at that age. When, at 13 months, she had a big seizure, tests revealed she had Koolen-de Vries syndrome. This is a very rare genetic condition which can cause multiple disorders.
“Saryn’s diagnosis turned our lives upside down. We went through grief and anguish, and it took us a couple of years to accept she had it,” says Kerry.
“We were desperate for information and went to the local library, but they didn’t have any information about Koolen-de Vries. Then I found out about the IHC library and that has turned out to be a fantastic resource for us. “
Saryn has a developmental delay and intellectual disability. She has seizures on average once a week. Now seven years old, she can only say a couple of words and is not yet toilet trained. She has also recently begun to show signs of anxiety. Despite this, Kerry says Saryn is making good progress with the help of her two brothers.
The family’s challenges come from things that many people take for granted.
Finding good people who can help care for Saryn is one of those challenges. “There are so many things you have to learn about caring for children like Saryn and how their brains work.”
Kerry and Steve say one of the most difficult things about Saryn’s disability is how other people react to her. The family recently had a trip away to Hanmer Springs.
“Saryn cleared the pool every time she went in as the other kids moved out of the pool and away from her. I found myself constantly explaining to other parents that she is OK to play with their kids,” says Kerry. “It affects the boys too when no one will play with them as they are with her. I was really upset and angry for a couple of days after we got back.”
Kerry doesn’t know what the future will hold for Saryn, but she and Steve want to give her as many opportunities as they possibly can.
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