IHC Annual Appeal 2017

Saryn just wants to play

Media release - 1 February 2017

Saryn’s brothers couldn’t understand why the kids in the pool didn’t want to play with her.

When the family went on holiday recently to Hanmer Springs, the other children got out of the pool as soon as Saryn got in. “For four days in a row Saryn managed to clear the pool,” her Mum Kerry Semmens says.

Saryn (7), has Koolen de Vries syndrome, a rare genetic condition which can cause multiple disorders ¬¬– and misunderstandings.

“Saryn is often very friendly and she goes up to people, which can be a challenge. Saryn is quite verbally noisy. She doesn’t really talk but she does quite a lot of noisy sounds and children don’t know how to react to this,” Kerry says.

“After a while it kind of hurts your feelings a bit that she is not getting embraced and accepted but, again, we just have to be compassionate towards others.” She says they realise that other people don’t understand.

“She’s just a little girl who wants to have fun, like all the other kids,” Kerry says.

Kerry and Steve Semmens live in Tapawera, a small rural community about an hour south-west of Nelson. They run a 400-hectare dairy farm and raise their three children, Kade (9), Saryn and Axel (4). Saryn and her family feature in this year’s IHC Annual Appeal, which runs throughout February.

“When Saryn was born, we just thought she was a typical child, just like her older brother Kade. It wasn’t until she was 13 months old she had a bad seizure and was then diagnosed with Koolen de Vries syndrome.

“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. They sent us a pack of information that explained about the things Saryn would struggle with and about how we could help her. Now, any time I need more information I request books online and they arrive within a couple of days.”

Saryn has a developmental delay and intellectual disability, and she experiences regular seizures. She can say only a couple of words. Saryn 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 boys play with her a lot and, without knowing it, teach her things. They’ve been helping her get her shoes on and off, and now she can do it for herself. She watches what they do and copies them.”

The family feel supported in the small community they live in. Saryn attends the local primary school full time and the kids there are happy to include her. She catches the bus and some of the older kids sit with her on the ride to and from school. They have been taught what to do if she has a seizure, and they sing songs and keep her entertained.

Kerry doesn’t know what the future will hold for Saryn, but she and Steve want to give her as many opportunities as they can. They want to make sure she has the chance to work and to live independently if that’s what she wants to do.

“When we look to the future I know we’ll need even more help from IHC. We will need more information and advice on caring for Saryn to make sure she reaches her full potential,” Kerry says.

“I love being Saryn’s Mum. I can truly say that. Five years ago it was very, very, very daunting. But I love being Saryn’s Mum now and I love being a Mum to a special needs kid. You don’t think you are going to ever think like that when you first get diagnosed. You think it’s the end of the world. But over time, through acceptance, we get there.”

You can read more about the IHC Annual Appeal and donate money to help children like Saryn at ihc.org.nz.

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