Albie’s story has been written by his mum Jodie
Albie was diagnosed with infantile spasms in September 2024 after months of me telling anyone who would listen that something wasn’t right. I can’t even properly explain it, I just knew. As a mum you trust your instincts, and mine were screaming at me that something wasn’t adding up. Those months of being worried and trying to be heard were exhausting and frightening.
When I finally got answers, I was told that Albie had suffered a perinatal stroke, which damaged his left motor cortex. He was also diagnosed with right hemiplegic cerebral palsy. Hearing those words about your baby changes everything in a second. The future suddenly feels uncertain and overwhelming. Those early days after diagnosis were some of the hardest of my life.
His infantile spasms were treated with prednisolone and vigabatrin. Starting those medications was terrifying. You read the leaflets, you worry about side effects, and you just hope you are doing the right thing. It was such a scary time, but the treatment worked and his spasms resolved. I will never forget the relief of knowing they had stopped. It felt like we could finally breathe again.
Albie is honestly the most resilient little boy. Even when things have been tough, he just keeps going. After coming off vigabatrin in January 2025, he learned to sit independently. That moment meant so much because it felt like proof that he was moving forward again. Since then he has continued to surprise me. He can now cruise along the furniture and is attempting to walk. Watching him work so hard for every milestone makes each one feel even more special.
What amazes me most is that he never moans. He doesn’t get frustrated for long. He just tries again. His determination is incredible for someone so small. He faces challenges that most toddlers never have to think about, and yet he does it with a smile.
Albie has recently started nursery and is absolutely thriving. I was so nervous about that step, but he has taken it in his stride. He loves numbers and animals and is so curious about the world around him. Seeing him playing, learning and making little friends makes my heart burst. He is so full of personality and joy.
Albie is my March Warrior because we are about to celebrate his second birthday, something that at one point felt overshadowed by fear and uncertainty. Now, instead of feeling scared of what is ahead, I feel hopeful. We are looking towards a brighter future. There will still be challenges, but there is also so much possibility.
UKIST have been such a huge source of support throughout our journey, especially the support group. In those early, darker days, connecting with other families who truly understood what infantile spasms meant made me feel less alone. That support has meant more than I can say. If sharing Albie’s story helps even one family who are at the beginning of this journey, please know that you are not alone. The early days are terrifying, but there is hope. There are milestones still to come. There are smiles, nursery days, and birthday celebrations waiting for you too.
I am so incredibly proud of you, Albie. You are stronger than you will ever know. My little lioncub!
Happy birthday Albie, from all the team at UKIST!
