• Born: August 12, 2014 | Variant: Unknown

Hi, I'm Theo from Wendover, Bucks.

I love the beach! Listening to the waves and paddling in the sea. I am extremely brave and am known as Super Thee to my friends and family.

Theo is a happy, smiley, affectionate and loving six year old with the most captivating big brown eyes and beautiful smile!

Theo was born a healthy 7lbs 2oz at 39 weeks, and at first did not seem to have any health issues. Over the first six months of his life, we started to have concerns about his development, interaction and behaviours and we began the referral process for an Autism diagnosis. When Theo was just over 2 years old, he had his first seizure. Theo spent the next few months in hospital where he experienced hundreds of seizures, and underwent a series of tests and trials of different medications. It was truly heartbreaking to see, but he took it all in his stride and was often found giggling to his Peppa Pig cartoons in his hospital bed, or cheekily running up and down the hospital corridors entertaining the other patients! Theo went on to receive diagnoses of Autism Spectrum Disorder, Complex Epilepsy, Global Developmental Delay, and SCN2A mutation by the time he was three.

Since then, Theo has faced many challenges, including further periods of ongoing and uncontrollable tonic clonic seizures, often resulting in status epilepticus and hospital admissions. He experiences daily seizures, including absence, myoclonic and focal seizures, and was most recently diagnosed with epileptic encephalopathy, which has caused a progressive decline in cognitive functioning and therefore gradual regression across many areas, including his mobility.

Despite the overwhelming difficulties that Theo faces every day, he is the most incredible little boy, and a true joy to be around. He attends a brilliant school where he receives constant 1:1 care, and input from numerous professionals including speech & language therapy, occupational therapy, and physiotherapy. We are so proud of his strength and resilience, and he inspires us all every day. Theo is non-verbal and struggles to communicate, yet we have built the most amazing bond with him as a family, and he really loves his little brother Otis and our dog Bear. Theo loves listening to music and watching his favourite shows on TV (Mr Tumble a close second to Peppa Pig)! He loves anything that spins, bright lights and loud sounds, puzzles, water play (swimming is his very favourite thing to do) and large trucks (who knew you could watch hours of dump trucks footage on YouTube)! Theo's favourite place is the beach - he loves to paddle in the water. Theo also gives the best cuddles of all time, although he'll make you sing "Incy Wincy Spider" a few hundred times to earn one!

We don't know what the future holds for our gorgeous boy, but the one thing Theo has taught us is to live for the positives, to appreciate the beauty in the little things, to treasure the happy times we have, and to always have hope. We are so proud of our Super Thee and so proud to be part of the SCN2A community full of amazing, inspirational superheroes just like our Super Thee xxx.


Our goal is to find a cure!

Did you or your child just receive a new diagnosis of SCN2A? If so, please know you are not alone!