In each issue of Reach Out we ask the TSC Community to share their experiences with an aspect of life with TSC. In this issue we’ve asked people who have a brother or sister with TSC to share their stories.This article was published in the April 2018 issue of Reach Out.

Remember that, like all information in Reach Out, this page represents the opinions of the author(s) and not official pronouncement of Tuberous Sclerosis Australia. This information should not be used without first seeking medical advice.

Clare’s Story

I am really proud to present this series of sibling stories for this issue of Reach Out. It has been an honour to interview each sibling and listen to their stories, their strength and their kindness. Each day I am motivated and informed in my work for TSA because of my own experience as Lizzie’s big sister. When I say it defined me, it still feels like an understatement!

Lizzie was born when I was two years old. She was severely affected by TSC and polycystic kidney disease (PKD). She had a profound intellectual disability, never developed speech and went into kidney failure in her 20s. There was no family history and I travelled the journey of TSC and PKD along with Lizzie because of an unlucky draw from the genetic lottery. I think understanding the huge role luck or fortune plays in all our lives is the biggest difference I have always seen between myself and my peers.

“I knew my parents were busy and subconsciously didn’t turn to them for help in the same way my friends may have done to their parents.”

Whenever I read an article on siblings of people with disabilities I find I check most of the boxes. I was fairly mature and willingly contributed to the huge amount of care Lizzie required. But I was also jealous of the huge amounts of free time some of my friends seemed to have. I loved Lizzie intensely with a simplicity I didn’t experience again until I had my own children. I was so proud of everything she accomplished. I knew my parents were busy and subconsciously didn’t turn to them for help in the same way my friends may have done to their parents. I defined myself as ‘the smart one’ and worked hard at school partly to get the recognition that came with that academic achievement. Being Lizzie’s sister made me strong and resilient, but also meant I had to learn slowly that sometimes it is ok to ask for help.

Caring for her while she was sick and dying when we were both in our twenties brought its own set of challenges. It was like being attached to a piece of elastic. Sometimes I’d try to live my own life and not be too involved in what was happening at home. My parents made it clear there was no obligation or expectation on me or my brothers. After a while, I would feel a pull to become more involved, being overwhelmed by the reality of her declining health and also the impact it was having on my parents and my youngest brothers. During this time I travelled and lived overseas but also felt uncomfortable that my sister didn’t have the freedom I had.

Lizzie’s death came at a huge time of transition for me. She died a few months after my wedding and I gave birth to my first child just after her first anniversary. It is an ongoing sadness for me that my two children will never meet their aunty Lizzie and experience her wicked sense of humour, unconventional dancing and unconditional love. But I tell them about TSC, the work I do and why I do it. When I explain to new families with TSC that their child has the opportunities of earlier interventions and new treatments that no previous generation of children with TSC has had, I am genuinely proud to be able to say that, but I am also sad for what Lizzie missed out on.

I hope you enjoy these sibling stories. Thank you to each of the siblings who volunteered to share them with us.

Cooper’s Story

I am ten years old and since my brother was born, it’s been a twisted life. Lachlan is now six years old and has tuberous sclerosis complex (TSC). He’s had brain surgery and also has autism.

It’s not often that you get a good kind of Lachie, but I think you’ve got to love what you’ve got. We get to play games together, we love adventures and we love tickling each other.

One of the hardest parts of being Lachie’s big brother is being woken up early in the morning to be played with. You don’t get much shut eye with Lachie in the house.

I know that TSC means that Lachie sometimes doesn’t behave himself. Sometimes he’ll give kisses and hugs; other times he’ll smack or scratch. It’s his choice, but his brain makes different choices than our brains.

I talk about Lachie and about how he’s had brain surgery and how tough it is with him sometimes. I explain that he’s the reason I don’t always get to school on time and don’t get to play with my friends a lot. Now that my friends understand, they do play with Lachie sometimes. I tell them to be careful when touching Lachie.

When I play soccer Lachie sometimes interrupts the game. He screams out loud and claps. He joins in with our family activities.

My teacher’s brother also has autism but he’s different to Lachie. I’ve learnt some new things about autism from chatting with my teacher, like how people with autism can learn things, but they may need to be shown something a lot of times for them to learn it.

Having a difficult life means I get to learn how to cope. I get to teach Lachie things and he teaches me stuff back.

Belinda’s Story

I am in my 40s and live in Sydney. I am a wife, a mum to two kids, and I work in the financial services industry. I have three siblings and two of my sisters, Christine and Maryanne, were born with tuberous sclerosis complex (TSC).

Christine is five years older than me and lives in a group home with others with intellectual disabilities in Sydney. TSC has also affected her kidneys and she’s been on dialysis for the last two years. Growing up, I remember Christine was not able to do the things that Maryanne and I could and there’s a lot of sadness that comes with that. She did join in with family events and holidays but, there was always a lot we had to do, for Christine to be able to join us.

I remember when we were children that there wasn’t as much of a difference. We’d play and listen to music together and do things, as you would with any sister. As we got older there was a realisation that she was different. Three of us went off to our school, but Christine went to a different school. We were all very protective of Christine. Kids could be very cruel and we stuck up for her.

Christine moved out of our family home when she turned 18. I would visit her and take her out, making sure she had social events. As we both grew up and had our own families, Maryanne and I shared having her stay with us for weekends and coordinating her health care.

Maryanne, my younger sister, also had TSC but this did not affect her mentally and we had a relationship similar to many sisters, including going to concerts and parties. After she was diagnosed with TSC, I did provide emotional and practical support for Maryanne. She struggled with the marks on her face, especially as a teenager. I also helped by taking her to medical appointments. Maryanne got married and had a son and everything was pretty normal.

Three years ago Maryanne started having severe headaches. It took some time before we found out this was due to a large subependymal giant cell astrocytoma (SEGA) growing in the middle of her brain. In February 2015 Maryanne died from complications relating to this tumour. It has been a very difficult few years adjusting to life without her as well as supporting her husband and son.

These days I play a significant role in Christine’s care, with most of this falling to me now that Maryanne has passed away. This includes coordinating her NDIS plan, her group home and her health care. For example, Christine’s in hospital right now and I have been visiting regularly and making sure she has some carers to spend time with her – juggling that along with my own work and family life.

Things have changed a lot for TSC in recent years. When I was younger there wasn’t as much information available on TSC. I didn’t really know how to deal with different aspects of my sisters’ condition. Even when we went to medical appointments few doctors knew about TSC.

There’s a lot more information and awareness about TSC now and I find it much easier to support my sister and understand this disease.

When I think about how TSC has affected my life, I think I have more empathy than other people. I have more of an understanding and awareness of, not just TSC, but other conditions and issues as well.

If I was giving advice to other siblings of people with TSC, I’d tell them to embrace it. We still had heaps of fun and life was mostly normal. Get as much information as you can about TSC – it is complicated! I learnt through our experience with Maryanne that keeping on top of TSC is crucial. Don’t become complacent with regular checks and tests.

Tuberous Sclerosis Australia has a great website, and the Facebook group is really useful for connecting with others and asking questions (even if it’s very parent focussed sometimes). Becoming a part of the community reminds you that you’re not alone.

Georgina’s Story

I am 23 and my younger brother Jacob is 21 and lives with tuberous sclerosis complex (TSC). I am studying at university, in my final year of music therapy, combining my love of music and psychology. Jacob works at Bedford Industries, an Australian disability enterprise, in their packaging team. We grew up in Ballarat and now live in Adelaide.

Jacob is the life of our family. We’re generally a shyer group of people, but Jacob can make conversation with anyone. He brings so much joy and an almost child-like innocence that has stuck with him even as he’s grown up. Everyone thinks the world of Jacob and he makes friends really easily. Even though TSC has caused Jacob many challenges, we feel very blessed to have him.

The major impact of TSC on Jacob’s life is his intellectual disability. He has some more advanced social skills, but isn’t able to read or write or do basic mathematics. Of course, he also has the physical signs of TSC and sees lots of doctors to monitor how the tumours throughout his body are growing. He had brain surgery about ten years ago, but everything else has been under control, which is great. Jacob takes it all in his stride.

Although I have nothing else to compare it to, I think being Jacob’s sister has made me more understanding.

From knowing Jacob and his friends, I have a different perspective and am more natural with people who are different.

Jacob’s attitude is totally without judgement. I don’t know that he even comprehends disability at all. When I see this, it reminds me to be more like that.

Growing up, I don’t think I really knew that our family was different until later in primary school. We’d be out in public and Jacob would just start singing. He’s always been a free spirit. People would walk past and think it was bizarre, but we’d just think, “That’s Jacob and he’s having a great time.” I can remember being with a large group of friends from our church and Jacob decided he was going to get up and perform a song, possibly not the most appropriate song choice of, ‘Don’t cha wish your girlfriend was hot like me’. Everyone knew Jacob well and, although it caught everyone off guard, we generally just let Jacob be Jacob and all enjoyed his singing and dancing.

Of course, life wasn’t always singing and dancing. One of the hardest things is when my patience is challenged. Jacob can be very fixated on things, such as his current obsession with flags. It’s just so intense and relentless and it’s been an obsession for the last ten years. It’s harmless enough, but it does get tiring.

I can’t ever remember feeling like my parents gave Jacob too much attention or that they didn’t help me enough. If Jacob needed someone with him, it was often Mum with him and Dad would spend more time with me. My grandparents also played a big role and if Jacob needed both Mum and Dad then I would have a great time with Grandmother and Grandad. They’d also check in with me regularly and make sure I was ok. Even if there was a physical distance, calling and having a chat showed me they were thinking of me and they loved me.

I know everyone is affected differently, but if I had to offer advice to someone else with a brother or sister with TSC, I’d tell them to be open to what their sibling can teach them. For me, Jacob reminds me to enjoy the small things, to not be too quick to judge, and to be more loving. Even though it does come with many challenges, there are definitely gems that you can grab out of your situation.

Danny’s Story

My name is Danny and I am 13 years old. I live in New Zealand and enjoy hockey, swimming and playing computer games. My younger sister Rylee has tuberous sclerosis complex (TSC). We found out when she was two days old and I was three years old. I didn’t really understand at the time but I knew that Mum and Dad were very worried.

TSC means that Rylee’s brain works differently. She takes longer to learn new things and gets really grumpy when she’s not happy. When she was younger she would sometimes get so angry that she would hurt me, but it’s been better recently. She also used to wake me up in the middle of the night when she had trouble sleeping. She just couldn’t understand why I did not want to get up and play at 3 o’clock in the morning and shake me until I got upset and my Mum came. These days she knows that she has to stay in bed and play by herself until it’s time to get up.

Having a sister with TSC has meant I have learnt to do many things differently. I had to learn how to play differently with Rylee. For example, when we play hide and seek I can’t go and find her straight away.  I have to pretend to take longer even when I know where she is hiding. I don’t mind doing this as it makes her enjoy the game more and it is cool to see her happy and laughing while I pretend to look for her. We do enjoy being together and I’ve even taught her how to play Minecraft, a computer game where you mine for materials and then build things. We have our own Minecraft virtual world where we play together and she builds some really crazy things! This is one game that she can play by herself and I don’t have to worry about her not knowing what to do. I find it a really special thing to share.

Because we go to a small school, Rylee and I are in the same class. This is ok, because a lot of the time she’s doing her own work separately from the rest of us. But if Rylee gets hurt then people do ask me for help. Sometimes this worries me as I won’t be at school next year and I won’t be there to help her. I explain to the kids at school that Rylee learns differently and that she has a bad temper. Some kids understand it, but others, especially the younger kids, don’t. I have two best friends who really do understand Rylee and enjoy playing with her. We even share our Minecraft world with her and give Rylee her own space to build in. It is important that my friends accept Rylee for who she is. I don’t think we would be friends if they were mean to her like other kids are sometimes.

At school last year, I gave a speech about what it was like growing up with Rylee and her TSC. I told the story of how she made up her own words to New Zealand’s national anthem. Instead of singing ‘God of nations at thy feet’ she would sing ‘Mother nature, 1, 2, 3’! That got a few laughs from the audience. It also felt good to share with people how tough it can be for my sister and that they should walk a mile in her shoes. I am very lucky I don’t have TSC.

Sometimes I do feel left out because of Rylee’s TSC. When Mum and Dad took her to Brisbane for a hospital stay I went to stay with my grandmother. I didn’t like feeling left out of their trip. But generally Mum and Dad do a good job of treating us both the same. There is one exception – because Rylee doesn’t understand money yet she doesn’t have to save up to buy things like I do. When I buy something with my money Rylee often gets something bought for her. This annoys me a bit.

I think being Rylee’s brother has made me more understanding of how people can be different. There are two other kids at our school with learning disabilities and lots of kids leave them out or get angry with them. I know they are different and I am much more patient with them.

If I had to give advice to other kids who have a brother or sister with TSC it would be to accept them the way they are. You can learn heaps from those who are different.

Elise’s Story

I am 15 and in Year 10 at school in Brisbane. I have two 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 & Godric

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.

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 Goderick 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 but 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.