Kennedy
Wriiten by Kristy, Kennedy’s mum (QLD, May 2024)
Kennedy was diagnosed with TSC at 7 months old. She was 6 months old when she started having infantile spasms, although initially we had no idea what they were. For almost a month we put it down to those sudden jerky movements that many babies have. It wasn’t until Kennedy started to become increasingly tired and almost like a shell of her happy self that Kennedy’s dad and myself felt like there was more going on.
We presented to the Toowoomba Base hospital on the 31 March 2022 and it was there that the footage we had taken of Kennedy was viewed and sent to the Queensland Children’s Hospital in Brisbane. Within a couple of hours, we received the news that Kennedy was having infantile spasms. She was started on medication that night. Thankfully it started to work for her and we noticed a difference in the number of spasms she was having in just a couple of days. The following week on the 7 April 2022 we took Kennedy for an MRI in Brisbane and that same evening we were told that Kennedy had been diagnosed with TSC (Tuberous Sclerosis Complex).
Before Kennedy’s diagnosis we had no idea what TSC even was. It was a very overwhelming time and there were so many unknowns. As anyone who is diagnosed or has a loved one living with TSC knows, there’s no two stories that are the same and this condition impacts everyone differently.
After the sudden shock of Kennedy’s diagnosis, it took us as a family a little while to adjust to our ‘new normal’. The following few months were a whirlwind of appointments and thankfully for almost 6 months Kennedy was seizure free. However, in October 2022 she started having focal seizures and unfortunately, this time, medications could not control them.
We are grateful for the information and support that TSA provides. It makes a very hard journey a little easier. I would encourage people to support TSA. TSC is not a well-known genetic condition and many people don’t know or understand anything about it. But, with every donation to TSA and with each person who takes the time to use their website to find out and educate themselves about the condition, we can start to make a difference.
In August 2023 Kennedy underwent a craniotomy with a resection of two tubers. Unfortunately, the surgery didn’t have the outcome her medical team and we were hoping, for but it has worked to a certain degree. Although Kennedy still has active seizures they aren’t as often and there are not as many. Apart from this, Kennedy is thriving and doing extremely well. She is now two and half years old. She has some development delays, but she is cheeky and makes us laugh all the time. She continues to learn and grow and make us proud of her every day.
We first found out about TSA (Tuberous Sclerosis Australia) when we received Kennedy’s TSC diagnosis. We were told to visit the TSA webpage for any information and support we may need. We are grateful for the information and support that TSA provides. It makes a very hard journey a little easier. I would encourage people to support TSA. TSC is not a well-known genetic condition and many people don’t know or understand anything about it. But, with every donation to TSA and with each person who takes the time to use their website to find out and educate themselves about the condition, we can start to make a difference.
Our hope for our family is to watch Kennedy continue to grow and thrive. We know that life might be a little hard at times, but we remain positive that the good will outweigh the bad. We hope that anyone who is living with TSC or has a loved one living with TSC will continue to feel supported and know that they are not on this journey alone.
