Reach Out April 2018

Personal Stories
Elise’s story
am 15 and in Year 10 at school in Brisbane. I have two
I younger sisters, Dayna and Evie. Dayna has tuberous
sclerosis complex (TSC). In my spare time I enjoy dancing
and reading.
TSC has a big impact on Dayna’s life. She needs to be helped
with everyday tasks such as showering, dressing and eating.
She attends a special school that is 45 minutes’ drive from our
house. Dayna was very slow to walk and crawled for a long time.
Even now she can’t walk for long periods and is still in a stroller.
She has around 40 seizures each day, most of them minor. Her
epilepsy medication means she has problems controlling her
temperature, so we always need to have air conditioning. If she
gets too hot Dayna can get really angry and also start having
seizures. That’s stressful for everyone.
One of the biggest impacts on my life is that I don’t like being
away from home for very long. When I was younger and went on
a sleepover I would start panicking and worry that Dayna may
need to go to hospital and I wouldn’t be there to help. These days
I can be away from home, but I manage by staying in frequent
contact and reminding myself that, even if something happened,
there wouldn’t be too much I could do. My friends are very
understanding. Most of them have met Dayna and love her –
everyone usually does!
Dayna is really happy 95% of the time. She’s fairly easy
going. I am one of her favourite people and she’s always hugging
me. We like watching TV and going to the park together. She’s
my best friend.
Dayna has a group of friends that she’s made at school over the
years. I have met some of their families and I enjoy talking to the
other brothers and sisters in that group who understand what it is
like to have a sibling with a disability.
For our family, it can be hard for all of us to go somewhere
together. If Dayna is upset, then all or some of us may have to leave
wherever we are to look after her. This is a contrast to my friends,
who talk about going out somewhere together as a whole family.
I think being Dayna’s sister means I have more initiative. I help
Dayna with medication and showering each day. That might sound
like a lot of work, but I enjoy doing this and Dayna is easy to hang
out with.
Dayna & Godric
A few years ago we decided to get a dog for our family because
we thought Dayna would be really good with a dog. My Dad took
all three of us to the rescue shelter. While we were there Dayna had
a meltdown. Everyone else in the shelter was staring and glaring
at us, not understanding what was going on. I took Dayna’s hand,
picked her up and took her over to the cage to give her something
to hold on to. The one dog that was not barking at Dayna came
straight up to her and licked her hand. Dayna calmed down
completely. That dog is now called Godric and he’s a much loved
member of our family.
If I was talking to other people who have a brother or sister
with TSC, I’d tell them to focus on trying to understand their
brother or sister. Everyone with TSC is different and they all have
their own likes and dislikes. Taking notice of these things and
figuring out what can upset them can be really useful.
I think it’s important for parents to look out for siblings
who don’t have TSC. It takes a lot of time and effort to look after
someone with a disability and I know kids can feel left out when
they don’t get that attention. My parents encouraged my sister Evie
and me to do activities outside school that they can go with us to.
Evie does gymnastics and I dance.
When I think about the future I hope I will never be far away
from Dayna. I know that she’s going to be ok.
I think it’s important for parents to look out for siblings
who don’t have TSC. It takes a lot of time and effort to look
after someone with a disability and I know kids can feel left out
when they don’t get that attention.
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