A Stevenage mum is set to take on a remarkable challenge this weekend to raise money for her three-year-old son Oakley, who is living with an extremely rare brain condition.

Oakley was diagnosed as a newborn with Microlissencephaly – a condition so rare doctors feared he would never be able to see, hear, move or swallow. They also warned his health would likely decline.

But Oakley has been defying all expectations. Thanks to intensive therapy not available on the NHS, he is now tube-free, communicating through expressive sounds and a choice board, laughing and smiling at those around him, and experiencing fewer seizures. His awareness and ability to move are continuing to improve.

Now his mum Daryl will be putting herself to the test at the ATW Welwyn 10K on Sunday 28 September. She will run the entire race wearing a weighted vest and carrying a doll to represent Oakley's current weight of 18kg.

"Until Oakley can walk, I will carry him," Daryl said.

"This challenge represents not only the physical weight of carrying Oakley, but the unseen weight I shoulder every day – the equipment, the appointments, the worry, and the fight for his future. Every step I take is for him.

"For children like Oakley, decline is expected — but Oakley is improving. That's proof of how vital this therapy is."

Funds raised will go towards specialist treatment abroad and equipment to support Oakley's development, with the hope that one day he may be able to walk.

💛 Anyone who would like to support can donate via: justgiving.com/page/iwillcarryoakley

Supporters can also follow Daryl and Oakley's journey on Instagram @acornupdates, or contact [email protected] to find out more.