Hearing the words Tuberous Sclerosis Complex for the first time is a life-changing moment for families all across the UK every day. But, the TSA is here for everyone in the TSC community on this journey.
For the TSA Spring 2024 Appeal, we’re asking you to please make a regular monthly donation so that we can continue to deliver vital support services to those hearing ‘Tuberous Sclerosis Complex’ for the first time.
Jonah’s journey
Little Jonah was diagnosed with TSC at just a few months old. Jonah’s mum Laura has shared what her family’s TSC journey has been like so far, and how the TSA has been “a light in the dark”.
“TSC was something I’d never even heard of, let alone knew anything about! We’ll never forget the moment of Jonah’s TSC diagnosis. It felt like our hearts has shattered into a million pieces.”
Every penny and pound really does count and will ensure we can be here for families like Laura’s now and in the future.
“On 25 October 2022 myself, my husband Aaron and our 3-year-old daughter Ruby were delighted to welcome baby Jonah into the world. After a very difficult time following Ruby’s birth during the first covid lockdown in 2020 we were very much looking forward to a different experience this time around. For the first 6 months we enjoyed being caught up in our baby bubble and made lots of happy memories together including a family trip to Disneyland Paris.
This is the last time I remember feeling worry-free, without any idea of how the next few months would completely turn our lives upside down.
When Jonah was just over six months old, we noticed that he kept heavily blinking, a bit like a startle reflex but for no apparent reason. The blinking then turned into clusters of head drops and eye rolls and Jonah was admitted to the children’s ward at the Royal Blackburn Hospital, where we spent the next nine days. Lots of tests and scans finally lead to us being told that Jonah has Tuberous Sclerosis Complex.
We were just completely lost and overwhelmed with sadness for our baby boy. It felt like we were grieving for the life we had imaged he’d have before the TSC diagnosis.
Not long after Jonah’s diagnosis I thankfully found the TSA. I contacted them and then got a Welcome Pack. Reading it filled me with so much hope and comfort at a time when we needed it the most.There is no cure for TSC, I’d do absolutely anything to take it away from Jonah but I can’t. I’d describe the TSA as like a light in the dark.
Jonah’s diagnosis with TSC left me feeling helpless, but fundraising has helped me to feel like I am able to make a positive difference. I’m determined to learn as much as I possibly can about this condition, so we’re able to help guide Jonah along his TSC journey and our families TSC journey especially as he gets older and starts understanding more about it.
Even though it can sometimes be emotionally draining talking about TSC to others, I’ll shout from the rooftops about it to anyone who will listen. I think it is extremely important to raise awareness and funds, not only to help find a cure but also to help prevent people with TSC having to answer as many questions in future. People will just know about the condition, and be able to support those affected.
As a parent, it’s very hard to accept that life just goes on when your child receives a diagnosis like TSC, but the harsh reality is that it does. Despite the heartache and constant worries, you’ve just got to get up and keep going whether that’s one day at a time or one minute at a time.
It can feel like living in limbo when a family member first gets diagnosed with TSC and extremely hard to look to the future with any positivity, however I can now say that it feels good to be getting back to our ‘new norm’, whatever that may look like as we power on.
Development-wise Jonah is absolutely thriving, and we couldn’t be prouder of him! I think every milestone reached feels that much more precious when faced with a condition like TSC. Whenever he learns a new skill or new words, we just beam with pride.
It’s extremely hard to accept when someone you love is diagnosed with a lifelong condition that you can do absolutely nothing about. As a family we are determined to raise as much money as we can for the TSA, they are a wonderful charity who offer invaluable support to those affected by TSC.
The TSA need funding to continue to provide vital services to families like ours, and for research that could eventually lead to a cure for people affected by TSC like our little boy Jonah.”
Your generous donation will be thoughtfully used in areas where it will have the most impact and address the most pressing needs. Thank you for all of your support.
