The Australasian Tuberous Sclerosis Society

Leanne is the mother of two boys, Joel & Luke.  She has been involved with the ATSS Committee since 2002 and currently holds the position of Vice President.  Leanne maintains the ATSS member database, answers the 1330 733 435 phone number and helps with various administration/secretarial duties.

Her son, Luke, was diagnosed with TSC in 2000 when he was 5 months of age and she has dealt with a range of TSC associated medical and behavourial problems.  Luke currently attends a Special Needs School with a view to transition to a mainstream setting in the near future. 

Leanne currently works part-time in the adult disability sector, along with casual work in an autistic school. Leanne continues to study in different fields within these areas. 

Leanne balances her family, ATSS and work life in a positive and energetic way and wouldn’t be able to do so without the support of her extended family and friends.

My diagnosis led to many tests and visits to various doctors. The message they all seemed to be giving me was that I have Tuberous Sclerosis, but it does not appear to be affecting the way anything is working. I am now aware of the possible effects, but I get on with enjoying my life and don’t spend much time worrying about symptoms that I don’t have and may never have.

I have some skin markings, but I don’t pay much attention to them. After I was diagnosed I had a CT scan, which indicated calcifications in my brain, but they do not affect the way it functions. I have never had any seizures. More recently some cysts have been found in my kidneys, but my kidney function is fine.

In 1995 I became part of the ATSS Committee. For me ATSS is like a big family, and we share our journeys together of life with Tuberous Sclerosis. ATSS provides support and encouragement to families affected by Tuberous Sclerosis, and hopefully helps them to realise that they are not alone. I am also the Editor of Reach Out and love receiving any contributions, however large or small.

Aside from ATSS I enjoy many activities. I work full-time as a school counsellor, a job that I really enjoy.

I hope that ATSS can help to make the challenges of living with Tuberous Sclerosis easier for you.

Belinda is married to Charles, and is a mother of three, Sarah, Adam and Edward.

Sarah was diagnosed with TSC when she was 2 days old and seizures began at 6 weeks. This is when we made contact with ATSS to understand the condition.

I decided to become a member and have volunteered over the years to do the treasury work, assist in fund raising and to support the Committee.

Sarah’s epilepsy ranges from petite mals, complex partial, and now experiencing some generalized seizures. She has maintained fairly good control on two anti-convulsant drugs for nearly 14 years.

For 12 years Sarah saw Ears/Nose/Throat specialists for ear grommets, she has a mild hearing loss in one ear. Her facial rash (angiofibroma) has been treated, with follow-ups required.

Physiotherapy began as a baby to assist her low tone in her upper body. Physio has begun again for her scoliosis and kyphosis.

Sarah is able to communicate with limited speech and Speech Therapy has always been in force throughout her school years. She is currently taking part in a communication project, involving computer assisted devices.

Sarah attended a regular Day Care Centre for her first 2 years. She spent 3 years at Macquarie Uni Early Intervention Centres and then had 3 years in a mainstream school. She has attended 2 Special Schools, with high school focusing on Living Skills and Work Experience.

Sarah loves swimming, horse riding, weekly Scout meetings and outings, Saturday Fun Club, and Sunny Days, a teenage social group.

She also enjoys discos, parties, dancing, bowling, music, movies, eating, sleeping, big planes and holidays!

Jannifer's son Nathan, born September, 1989, has Tuberous Sclerosis. My initial contact with ATSS was when Nathan was diagnosed at 8 months of age. I was lucky that his neurologist gave us the details of the society.

Nathan was originally diagnosed as epileptic at age 6 months, he was having infantile spasms. He was treated with ACTH and put on Tegretol. He is severely intellectually affected, no speech or formal communication skills and epilepsy which has not been fully controlled since 3 years of age.

Nathan has the typical facial rash, (angiofibroma) which was treated with the argon laser at a young age, white patches and 2 pigmented spots on his body. He has calcifications on his brain and had a benign brain tumor, (giant cell astrocytoma) removed when he was 5 years old. He also has some autistic tendencies as well as kidney and liver involvement (angiomyolipomas) and has a bone density on his pelvis.

Nathan is an affectionate young teenager who enjoys music, swimming and outings. He attends a special school in the Hunter Valley where he is working on an individual programme towards independence.

Being a member of the committee is very rewarding for me as I feel that I can offer something back for all the support ATSS has given me over the years with helping me understand this condition. It's also a great opportunity to talk with other people who have been affected by TSC, either personally or have a family member. I have been involved in many groups and have attended many seminars on various topics over the years and have met some wonderful people that have enriched my life.

My sister Lizzie has Tuberous Sclerosis. I also have three brothers, none of whom has TSC. I work as a consultant in the Banking industry.

Lizzie was diagnosed when I was about 3 years old, so Tuberous Sclerosis has always been a part of my life. My mother Sue was on the committee and then was President and I have been on the commitee since 2003.

I maintain this website and receive all the emails directed to ATSS. I also get involved in other projects, events and fundraising.

Elizabeth is severly affected by TSC and involves her brain, kidneys, lungs and skin. I am particularly interested in the impacts of disability on siblings and the wider family. I would be happy to hear from any siblings of people with TSC.

Full-time mother of two, Amelia and Lachlan. Our daughter Amelia is 12 years old, she was diagnosed at 4 months with TSC. Amelia has a moderate intellectual disability, associated developmental delay and epilepsy.

With Amelia being our first child we found her young years very difficult and the adjustment to being told your child has a disability was challenging. Things have improved greatly as Amelia has grown older.

Her seizures have been better controlled in recent years and the improvement of her language skills has had a big impact on her social skills and behaviour. She is an incredibly loving child who is a constant source of joy to her family and friends. She attends the same primary school as her brother Lachlan (8) in an IO class with 9 other classmates who have a moderate intellectual disability. She thrives in the school environment and has an active out of school social life.

I have been on the Committee for some years now and by comparison to others my contribution is small but nonetheless worthwhile and enjoyable.

Our association with ATSS which started when Amelia was about one, has been a wonderful source of strength and support and we hope now that we are “further down the track” that we can offer strength, support and advice to other parents of young children and reassure them that although at times things seem bleak, there is light at the end of the tunnel!

Wife of Damien; hard-working dairy farmer and devoted Husband/Daddy. Unfortunately, I do not share my Husband’s passion for the dairy industry & spend as little time on the farm as possible!!
Mother of 3 gorgeous little girls; Lily (6 yrs), Hope (3yrs) & Poppy (6 mths). Lily was diagnosed with TSC at 13 mths of age after having 4 tonic clonic seizures.

Lily has skin markings (incl. the beginnings of facial angiofibromas), brain involvement, epilepsy (controlled at this stage after undergoing Neurosurgery 4 years ago), visual impairment (left hemianopia) and developmental delay. Lily started school in 2009 and attends a local mainstream primary school 1 day a week, and a Specialist School the other 4 days. Lily is a delightful, little chatterbox who loves life! She adores her 2 little sisters and her extended family and is thoroughly enjoying school life so far. After such a bleak, uncertain TSC diagnosis, Lily has astounded us with her development and surpassed all our expectations. We are very proud of her and celebrate each and every one of her achievements, often with a tear in our eye.

My work background pre-children was secretarial/administration. I am now a full-time “stay at home” Mum (whose NEVER home) and I dabble in a little bit of bookwork/accounts in my spare time!

I first became involved with the ATSS in 2004 and have been in regular contact with the Committee since Lily’s diagnosis. I attended my first Conference weekend/AGM in August, 2006 and joined the ATSS Committee because I would like to be able to give something back to Sue and her fabulous, hard-working Committee who have been my "guardian angels" since Lily was diagnosed! I am also interested in learning as much as possible about TSC and believe that this is the perfect way to expand my knowledge while meeting some fantastic people/families along the way. In my lifetime, I would like to raise community awareness of TSC.

Linda is married to Kevin and has a son Jordan who is 6, and a daughter Hayley who is 3. Hayley has Tuberous Sclerosis.

I first made contact with ATSS when Hayley was 4 months old. I was interested in finding out more about this condition and what I could expect in the future. I joined the committee after attending the Family Conference in August 2006.

We have lived with Tuberous Sclerosis for just over 3 years now, and received the official diagnosis when Hayley was 11 days old after we had seen seizure activity shortly after birth.

After intensive testing Hayley presented with 4 rhabdomyomas in her heart, and a great deal of tubers in her brain. She was also born with two shagreen patches, this assisted doctors with their early diagnosis. She also now has a great deal of Ash Leaf patches over her legs and torso.

Hayley has very low muscle tone, is unable to walk or crawl, is non verbal and developmentally delayed. She is currently taking 3 medications to try and gain seizure control, which we have never really achieved.

Hayley is a very happy little girl who brings so much joy to our lives. She attends our local early intervention service weekly, where she has access to physiotherapy and speech services.

I’m married to David and have two boys Damien & Bradley. I am a stay at home Mum many say I’m never home as I am constantly running around to numerous things for my kids.

I have TSC and am mildly affected. I was diagnosed when I was 4 by my facial angiofibroma I still have them but have had 3 laser surgeries in my teens and they are not as red as they were. I now have some small angiomyolipomas on my kidneys, dental pit, shagreen patch on my back and subungual fibromas on my nails. I have NOT had any seizures or learning difficulties throughout my life and I live life to the fullest and enjoy it every way possible.

Damien (8) is not affected but my youngest Bradley (5) was diagnosed with TSC when he was 3 months old and suffering from seizures. He suffers moderate to severe development delay and doesn’t talk. He has ash leaf marks, facial angiofibromas, a white tuff of hair, angiomyolipomas on his kidneys and he did have a small heart murmur and rhabdomyomas on his heart which have now all but gone.

During Bradley’s life he has had a lot of Occupational Therapy and Speech Therapy and in 2008 had Early Intervention. He loves to watch Hi-5 and loves being outdoors playing with bubbles or jumping on his trampoline. He is a very happy, easy going little boy and full of life to which he doesn’t like to sit still for too long.

Bradley has just started Kindergarten this year 2009 at a Special Needs School. William Rose at Seven Hills and so far we have been told that he is very happy and willing to learn to some extents but would love to play more (wouldn’t we all).

I contacted ATSS in 2006 after Bradley’s paediatrician told me about the website as I wanted to meet more families who cope with the condition. My family and I have attended the family picnic days and seminars that ATSS have throughout each year and have found that there are so many people out there dealing with TSC.

I became a volunteer committee member in August 2008 so that I can help the ATSS committee to achieve goals that will make TSC more aware in the community and to the professionals.