MY CONNECTION
One of my very dear friends gave birth to a beautiful little girl just over a year ago. Due to their terrible misfortune the year prior with the loss of a baby, this time she had followed all the professionals advise leading up to the pregnancy as well as during, to a tee.
At little Bella’s 6 week check she was diagnosed with Tuberous Sclerosis Complex (TSC).
TSC is a devastating genetic disease that causes tumours to form in various organs, primarily the brain, eyes, heart, kidneys, liver and lungs. People with TSC often develop epilepsy, autism, and learning and behavioural problems. Currently, there is no cure.
At 6 weeks Bella had over 25 tubours in her brain and 15 in her heart. This was just the most devastating news, I cannot even start to imagine how as a parent this would feel to be given this life shattering news about your brand new beautiful little baby. I still to this day find it so hard to think about and to discuss with my friend as it is just so emotional.
After having very serious brain surgery they found that Bella was having seizures every 20-30 seconds, if they had not had this surgery there would have been no hope for this gorgeous little girl. TSC is a very rare disease and although the support my girlfriend found in Australia was very strong there was very little of it. The Australasian Tublerous Sclerosis Society (ATSS) provides support through information and contact with other families affected by TSC. ATSS members include hundreds of families, in addition to many interested professionals from the medical, caring and education fields.Everybody needs support and the ATSS provides parents of children with TS with as much support as they can as well as helping them to build the networks they so need. ATSS also connects Australia and New Zealand with very important worldwide resources for TS.
After seeing little Bella and her Mum and Dad go through this, I will never take for granted how lucky I am to have my two beautiful healthy children.
THE AUSTRALASIAN TUBEROUS SCLEROSIS SOCIETY
The Australasian Tuberous Sclerosis Society (ATSS) is a volunteer run organisation based in Sydney, Australia. The committee works hard to align ATSS to its vision, mission and values.
- Provides access to current information and resources
- Help TSC families build relationships and support networks
- Connect Australia and New Zealand with worldwide resources
When doctors make a diagnosis of TSC it comes as an enormous shock to the family. Most people have never heard of the condition and they feel bewildered, isolated and often devastated. ATSS provides support through information and contact with other families affected by TSC. ATSS members include hundreds of families, in addition to many interested professionals from the medical, caring and education fields. ATSS is a founding member association of Tuberous Sclerosis International (TSI).
ATSS activities are in three areas:
Improving TSC Management and Treatment
Our family conferences provide opportunities for education and contact with medical professionals with expertise in treating and managing TSC. Through the journal Reach Out, the ATSS website, printed publications and through informal contact, information is shared between ATSS members. ATSS also supports various research projects and professional education.
Peer Support
Through contact and friendships between ATSS members, ATSS facilitates our members’ support networks. These networks are formed and strengthened by attending ATSS events and through contact with ATSS regional contacts throughout Australia and New Zealand. The ATSS committee all deal with TSC on a daily basis. Some are affected with TSC themselves, and many have a family member with TSC.
Raising Awareness of TSC
ATSS aims to raise the general awareness and understanding of the condition through publicity. For example, an annual lecture to medical students at The University of NSW attended by a TSC family gives future doctors a firsthand experience of the condition.
ATSS receives no ongoing funding relying on donations from members for operating costs. ATSS also receives support for specific projects from corporate fundraisers and holds its own fundraising events.
