Reach Out April 2019

Personal Stories
The result came back when Oliver was six months old and
confirmed that he had a mutation on his TSC2 gene and that
neither Michelle nor I have this mutation.
We made the decision to start telling our friends and family
what was going on. It had been difficult to go back and forth to the
Children’s Hospital without our family knowing. We were glad
that our family was able to get to know Oliver as a normal child,
without constantly thinking of seizures, TSC and special needs.
We explained that Oliver had TSC but we were unsure what impact
it would have on his life. We wanted to be confident in our own
TSC knowledge to be able to answer their questions and not have
to send them on an internet search.
As the months went by, Oliver started to miss some of his
milestones. This was very noticeable as close friends of ours had a
baby born on the same day as Oliver and his cousin was born only
six months later, so these other babies were a bit of a benchmark
for us. This delay meant Oliver started seeing a team of therapists –
occupational and speech particularly.
Oliver was started early on epilepsy medication as a baby,
after his EEG test showed some seizure activity. After a while, we
started to wean him off that medication. I can still remember his
first noticeable seizure when he was two years old. I was walking
with him in the city and he stumbled and fell. After I picked him
up he fell straight to sleep. At first we were freaking out and trying
to follow the neurologist’s instructions to video each seizure. It got
easier to automatically take out our phones and record seizures and
email the videos to the neurologist.
We found it a challenge to educate his day care team on his
seizure management plan. As soon as we felt like the team was
familiar with his seizures and the process, there would be a staff
change and we’d have to start with a new team member. By
the time Oliver started school we were very skilled at this and
could quickly adapt the information we provided to suit the new
situation and Oliver’s needs.
When I look back at our lives before we ever heard about TSC,
I think we had blinkers on. Once we were told our baby may have
this serious condition, I started to see what others were going
through particularly with children with epilepsy, autism and
learning delays. I had previously never really thought about the
day to day lives of people but now the blinkers were off, I started to
ask questions about how we would get what we needed for Oliver.
One example of this is Brainwave. Through Tuberous Sclerosis
Australia we found out about Brainwave and we have since been
involved in their camps and activities and met many other families
with children with a neurological condition.
If I had the chance to write a letter and send it through time
to myself back when Oliver was diagnosed, I would tell myself
not to stress. Despite the challenges that are in your future, you
will still enjoy the journey. You have a lot to learn but your child
is really not any different to any other child. He will have his own
personality and he will take so much joy from life. Treat your child
like a normal child. Don’t look too far into the future because you
risk missing out on the successes of the present.
We have given Oliver as normal a life as possible. He loves both
exploring the outdoors and watching sport with me on the couch.
He loves planes, trains and cars and asks ‘why?’ constantly. He
does have some delays and attends school in a support unit with
just five other peers. He still goes to the library and chooses the
books he wants to borrow. While he can’t read the books properly
yet, he enjoys telling us what is on each page. He is a typical seven
year old and has all the attitude that comes with that.
Oliver during a prenatal scan
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