Meet Julian! He is the kindest boy you would ever meet, always rescuing little bugs from the sidewalk and making sure everyone is included. He has loved dinosaurs ever since he was little, and dreams to go to university to study paleontology! To learn more about Julian's incredible milestone of giving injections to himself, his family's involvement in Rare Disease fundraisers, and more, read the interview conducted with Julian's mother below.
1. To start off, can you tell me a little bit about Julian?
Julian is 13 years old...I can’t believe I can say that now, I have a teenager! He has a rare genetic auto inflammatory disease called Tumor Necrosis Factor Receptor Associated Periodic Syndrome (or TRAPS), a genetic heart condition called Long QT Syndrome, and a blood disorder called Thrombophilia. He was diagnosed with TRAPS in 2015 after years of investigations for his “bad growing pains” and high fevers. He was then diagnosed with Long QT when he lost consciousness after going on an amusement ride at a festival and Thrombophilia was later discovered incidentally during a routine blood test. His episodes last anywhere from 1 week to a month, but we are grateful that his daily injections have lessened the severity of his episodes and remain hopeful for specialized treatment options to become available to us in the future.
2. What would surprise people the most about Julian?
It might sound strange but a lot of people are surprised by how chronically ill Julian actually is. They are shocked when they find out he has one disease, let alone several! I think a lot of people with invisible illness can relate to this. Julian very rarely has symptoms that can be seen on the outside, at least to the untrained eye. However, he lives with a high degree of pain daily and uses many mobility aids simply to get by, such as a wheelchair when his joints cannot support him or are locked in place.
3. What are Julian's interests? What is his personality like?
Julian has been dinosaur obsessed since he was a toddler and is still just as interested in them today! His focus is on going to university to study paleontology and that was only fueled further by being granted a Starlight Wish where he got to visit a real dig site.
He has the softest personality and is kind to everyone he meets, right down to rescuing little bugs off the sidewalk. Julian can be shy but once you get to know him he’ll do anything to make you smile!
4. What are some of Julian's best strengths?
Julian is the strongest person I know. He has dealt with so much from such a young age and he takes it all in his stride without complaining even once. He is stoic almost to a fault, as his doctors are always reminding him that it’s ok to let them know when the pain is too much. He always thinks of others before himself and has a great love for the environment and animals.
5. What is a recent milestone of Julian?
Julian has been having daily injections in his stomach since 2015 and the medication is very painful, like fire under the skin he says. Because of this I’ve given him the three injections every day, but a few weeks ago he decided he needed to take control of his diseases and started giving them to himself. It was a huge milestone for us and he couldn’t wait to tell his doctors!
6. What are some of your favorite resources as a parent?
When I first got the news about Julian’s conditions I was overwhelmed like so many other parents in our situation are, so I spent hours reading articles online and honestly I scared myself a little bit! There is so much information out there it can be easy to feel like it’s all just too much. Then I found little Facebook groups specially formed for parents with children who have the same conditions as Julian. It was a godsend! Talking to other families who are living what we are living, who have seen the same medical teams, tried the same meds, etc., really helped me sort through all the information and feel less alone.
7. How do you advocate for Julian?
I advocate for Julian by sharing his story on social media and connecting with other parents who are feeling a little lost at the start of their journeys. I participate in Rare Disease Day fundraisers and work with organizations to spread the word about the need for funding, for treatments and for proper diagnosis. I also think advocating for our children means showing up for them every day and helping them be heard by their doctors and other treating staff.
8. What is the most rewarding aspect of raising Julian?
Truthfully, the most rewarding part of raising Julian is that I just get to be with him every day and watch him grow into this beautiful young man, both inside and out.
9. What advice would you like to give other families who have a child/children with special needs?
You and your children are stronger than you sometimes feel. I know it’s daunting to look at the long road ahead of you but you both have it in you even when you feel like you’re running on empty. And also cuddles always help. Seriously, go give your little one a hug right now. It makes everything better!
10. What has your son taught you?
I truly feel blessed to be Julian’s mother. I learn so much from watching how he handles life’s hurdles, and I am constantly trying to follow his example. He doesn’t get stuck on past bad experiences and he doesn’t worry about the future. He stays focused and happy in the present and doesn’t stress about things that are outside of his control. That’s something I’m really trying to work on.
Tumor Necrosis Factor Receptor Associated Periodic Syndrome: A condition characterized by recurrent episodes of fever
Long QT Syndrome: A heart rhythm condition that can lead to fast heartbeats
Thrombophilia: A condition that increases the risk of blood clots
Starlight Wish (https://www.starlight.org.au/): An organization which gives children with critical condition(s) a life-changing wish.