Growing Together:

Written and presented by Camila Alispahic @ FRSA Conference, Adelaide, May 2022

My name is Camila, I am from Sydney NSW. I am a Young Carer for my little sister Amelia, who is 8 years old and has special medical needs. 

I am here today to tell my story about being a Young Carer and some of things that come with looking after someone with special needs and how an organisation called Young Carers has helped me.

Amelia was born with a rare disease called 'Lymphatic Malformation' and as its in her neck around her airway, she is unable to breathe normally and has a trachy to assist with breathing. She has a feeding tube to get her nutrition too. She is immune suppressed, this means she gets sick easily, a lot worse than a healthy person and it takes her longer to get better. She is in an out of hospital and has had 39 surgeries to date!!! 

Lymphatic Malformation (LM) is a rare disease that can occur anywhere on the body. It is most commonly on the head and neck. It’s is a problem that you're born with. The lymphatic system is part of the immune system that protects the body from infection. So, we are always extra careful.

When Amelia’s lymphatic system was being formed when mum was pregnant, it didn’t form correctly resulting in non-cancerous masses of fluid-filled cysts. Amelia has 1000’s of cysts big and small and some of them can never be treated because it’s too risky as they are tangled within her. There is no cure and she will have this condition for the rest of her life.

Bleeds are common with her condition and causes rapid pain, hardening, and swelling in the affected area and this has resulted in quite a few hospital trips.

Amelia needs constant supervision 24/7 to keep her safe. This not only affects her, but our whole family as well.  

For Amelia, she many limitations, she can’t shower by herself, she isn’t allowed to swim and or play any sports, she can’t attend school by herself, she can’t have play dates with her friends.  

For Mum and Dad, it means they need to be super organised, function on minimal sleep, to co-ordinate with each other, making sure that one of them are with her all the time and can be very stressful. Sometimes pays more attention to her than me.

For me…  I love her and would do anything for my family. I try to help as much as I can by setting up feeds, I pack her emergency bags, I keep Amelia entertained, I do extra chores around the house, I cook for the family a couple times a week. I miss out on time with mum and dad. But we just have to adapt and work around surgeries, illness and everyday life. 

Amelia and I still have disagreements, like ALL sisters do but, on the inside, I get scared and anxious, and just want things to be easier, but this is OUR NORMAL and we’ve been a family team since she has been born, 8 years ago!

So, what is Young Carers? Young Carers is an organisation designed to help young people that have a caring role for someone. This includes support from others in similar situations, fortnightly zoom meetings that covers all different topics. It provides a safe space, fun outings and much more.  I have been a part of Young Carers for almost 7 years and I am thankful for the many things they have done for me. 

Even though this has affected her whole life, I believe that we need to bring awareness to how this impacts the family. There are so many people out there who are quick to judge when they only know few minutes or hours of your life. I feel like there is such a stereotype that when you are a Carer for special needs you have to be medical trained, and that is all you tend to do, to help. But I can personally say for most yes, it is true we might have a few medical machines. But it’s also the little things help the most such as entertaining, cooking and other little things that go with it and makes a big difference. 

Being a Young Carer there are positives, though it has affected me a lot. It’s made grow up quicker, taking on more responsibility sooner. It has affected my mental health, with all the stresses and having anxiety all the time. At times I’m physically and emotionally drained, most of all the weight from others. When seeing people, you love the most hurting as well. 

From my experience we as Young Carers or Carers in general don’t want sympathy, we don’t want all the questions that we don’t have answers to. Such as: 

- Why did it happen? 

- What did we do wrong? 

All we need is comfort, understanding and time. 

Being a Carer at my age, I feel that it was not only Amelia, who has missed out and suffers, but I am in it with her.

Young Carers are different to counsellors. I have counselling sessions that I have come out and thought that was one of the worst hours ever. Simply because they would turn something like a risky procedure and try to make it out like it was amazing that this is happening. But yes, the procedure could go well but it shouldn’t need to happen at all. I simply needed was just a listening ear and that is where the Young Carers come in. 

The fortnightly zoom call allows me to ‘virtually’ meet other Young Carers my age, around Australia, going through similar battles in life. They can relate and they understand me. 

Especially, since COVID, the last two years, this has affected thousands of people’s mental health. Being isolated as a Young Carer is just an extra thing and Young Carers helps with minimising the effects.

Being a Carer you learn quickly, to deal with things as it comes. As other Carers out there, can relate, that even though it can be extremely hard sometimes, it is also rewarding knowing you are making a positive impact on the lives of someone you love and helping them. 

It’s not all BAD… being a Young Carer, is really special. Seeing Amelia improve and watching her grow into this amazing little girl is one of the best and most rewarding things in the world. As I’ve grown up, I understand more and have grown stronger as a person. Some of the little things such watching Amelia eat a full plate of food, hearing her talk for the first time or even her first steps, makes everything worth it. Even though these are such little things that everyone has experienced, these things are not little to us they are big milestones for Amelia. 

My sister Amelia may not know this but she has an amazing superpower and that is her smile. I say this because, she is always smiling, even with everything she has to deal with, and it’s contagious she makes others smile as well. 

We as Carers want people to become more aware of what it is like taking care of someone with special needs. We want people to really know what it is like being a Carer and the struggles that come with it. We don’t want the sympathy, we want understanding. But on top of all that, we also want the people who judge, to stop.

Amelia would not have this great life she has, without the amazing doctors and nurses. Without our parents, who continue shuffle life and adapt to what life throws our way, who continue to advocate for her and love their children unconditionally and without the TEAM surrounding her… including me! 

Young Carers has been a great support for me and if you need it they can be for you too.