With Seán’s mother Bernadette sharing her experiences of Sean’s diagnosis for Infantile Spasms Awareness Week 2025, Seán has also shared his reflections on being diagnosed with the condition as a child and how it affects him today…
As I will turn 16 during Infantile Spasms Awareness Week, I wanted to share how I was diagnosed with Infantile Spams at six months old. As I was so young I do not remember my experience with the condition but with the help of many different doctors, nurses, consultants and neurologists I am happy to say I am now 100% stable and 15 years free of seizures!
Growing up I found it hard to fully understand my diagnosis but as I grew older, I found it easier to understand. I am very lucky to have overcome Infantile Spasms with minimal long-term effects. As a result of my diagnosis, I developed some intellectual disadvantages such as dyslexia, dyspraxia and dysgraphia. To this day I still undergo periodic tests such as EEG and MRI scans as precautions, but all remain clear thankfully.
Infantile Spasms can be very scary for anybody affected, but I hope my story helps parents and children affected by infantile spasm syndrome to see that there can be a light at the end of the tunnel and it is possible for children to make a full recovery.
I hope this goes to show that no matter how scary it is for families hearing the diagnosis, you're not alone in your fight against Infantile Spasms. To anyone not affected, please learn more – as awareness and information about this condition is vital, and knowing the key word of STOP will potentially mean that more children will have better outcomes like me.
To everyone reading this I hope that my experience with Infantile Spasms inspires everyone effected to be brave and to stand up to STOP Infantile Spasms.
Thank you for reading.
Thank you Seán for sharing your experience for Infantile Spasms Awareness Week 2025 – an experience we know will provide hope to many navigating their journey with Infantile Spasms. We’d also like to wish you a Happy Sweet 16!
To follow Seán’s advice, learn more about Infantile Spasms by visiting the ‘Infantile Spasms Awareness’ page of our website. You can also read Bernadette's Story of infantile spasms by visiting this link on our website.