Tiny Steps, Big Impact: Help Tia Make a Difference

Hello,

Quite a few of you will already know Tia’s story, but I wanted to share a brief summary for those who don’t.

Tia was born on 8th July 2019. At around 3 months old, we noticed her doing some strange movements and took her to hospital. We told them we believed she was having seizures… but it took 3 months until we were finally listened to. Tia was eventually diagnosed with a rare and devastating form of childhood epilepsy called Infantile Spasms. This condition can cause catastrophic damage to the brain if left untreated. By the time treatment began, Tia had fully regressed back to newborn development.

Over the next year, we tried numerous medications, but none worked. The spasms evolved into severe, complex epilepsy. Her EEG showed seizures every single second, coming from all over her brain. We were told to make her “as comfortable as possible” and warned that the chances of her becoming seizure-free were almost zero. She was having hundreds of seizures every day and couldn’t develop because of them.

Desperate, I went down a rabbit hole searching for anything that might help. That’s when I discovered the medical ketogenic diet. It gave me a glimmer of hope! We spoke to her consultant and were put on the waiting list. But before we could start, Tia’s health declined rapidly. She was rushed to a larger hospital, where the diet was started as an emergency.

That very night, she went into status epilepticus — a prolonged, life-threatening seizure. She was rushed to ICU and loaded with medication. We were just one minute away from her being placed in an induced coma when, by some miracle, the seizure stopped.

We remained in hospital for 6 weeks while starting the diet. By the time we were discharged, Tia was smiling and laughing again — things she had lost. Also, her seizures had reduced by 80%!

On 18th December 2021, Tia had her first seizure-free day — and touch wood (), she hasn’t had a seizure since.

We’ve since weaned her off all anti-epileptic drugs. Her epilepsy is now managed solely through the ketogenic diet.

Tia has also been diagnosed with something called ALG13-CDG, with fewer than 100 known cases worldwide.

She still faces many challenges and delays, but we’re so proud of the progress she continues to make.

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This walk isn’t about the distance — it’s about the meaning behind it.

For Tia, even the smallest step takes huge effort. This challenge is about showing how far she’s come, not how far she can walk. It’s a way to shine a light on her journey, to raise awareness for rare conditions like ALG13-CDG, and to support wonderful charities like UK Infantile Spasms Trust and The Daisy Garland — to give back to those who’ve stood by us through the toughest times, and to help fund vital research to one day find a cure for ALG13-CDG. However far she gets, taking part is the real success.

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Tia will be attempting this challenge with her walker, but due to her physical and neurological difficulties, it will be broken into short supported sessions across the whole month — with plenty of rest and adult supervision.

This is a big challenge for Tia, and we hope to raise as much money as possible:

• UK Infantile Spasms Trust – A true lifeline in those early days. Their support changed everything, and I’m now proud to be a trustee, helping other families like ours.

• The Daisy Garland – The charity that helped make our ketogenic journey possible. Their guidance and support have been incredible, and Tia is now featured on one of their posters to help raise awareness of the diet.

• Finding a Cure for ALG13-CDG – In the hope that one day, a treatment — or even a cure — will be found for this ultra-rare condition.

Any donation, big or small, is truly appreciated

Chloe & Tia x