Annual Report of Tuberous Sclerosis Australia 2016/17

Gorgeous Greta
is 9 years old and has tuberous
sclerosis complex. TSA have provided life changing
information to Greta`s family that has helped Greta
to live her best possible life, despite their journey
Bridie, Greta’s mum was told that her unborn baby
would be “born with no quality of life at all and they
should start to think about palliative care”. The family
were beside themselves with shock and sadness. “This
doctor’s misinformation made that day the worst day of
my life. It was just horrible.”
TSA’s hope for the future is that no family should be
given this kind of incorrect information which causes
so much unnecessary fear and anxiety. Our focus on
providing information and support to families can be
transformative. Without the right information, Bridie
says she may have terminated the pregnancy.
Thankfully Greta’s family was introduced to a wonderful
volunteer from Tuberous Sclerosis Australia, Narelle.
“Getting the right information changed everything”
says mum Bridie. “Narelle’s daughter Lily is very similar
to Greta but a few years older. It’s been invaluable to
talk to Narelle during the bad times and to know that
they have been through similar things. It’s important
to me to know that there is someone there who I can
call. No matter how much your family and friends care
and love you, they don’t know what it is really like. The
connection with another parent who understands has
been amazing, and I will be forever grateful to TSA for
their volunteer program and providing us with the right
information about TSC.”
TSA’s focus on helping link families with TSC to expert
doctors and to other families who have experienced
similar things is invaluable. “Without TSA, we would not
have the support and information we need to get the
best care and treatment for our daughter Greta.”
Today Greta is exceeding all expectations and loves
singing, dancing and horse riding and is learning
more each day.
“Our family has been empowered to best manage
our daughter’s healthcare because of TSA’s online
right places and get involved with emerging clinical
trials. The TSA website has been a wonderful tool for
online information service we have provided it to our
GPs and other doctors so together we can go through
treating guidelines to make sure Greta is getting the
best treatment she can.”
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