Alfie Hanson & Liam Flavell are running the “Stratford Upon Avon Full Marathon” on the 26th April 2026 to raise £5,500 for Freyja who requires urgent disability support.

Freyja is 3 years old and was born with FoxG1 syndrome which is a life limiting condition and extremely rare with only roughly 800 people diagnosed in the world with it.

FoxG1 syndrome is a rare, severe neurodevelopmental disorder caused by mutations in the FoxG1 gene, essential for early brain development. It is characterized by microcephaly, profound intellectual disability, lack of speech, and significant motor impairment, often preventing independent walking or sitting. While incurable, management focuses on therapy and treating symptoms like seizures and feeding issues

Freyja has to be supported heavily whilst eating & is cared for 24 hours a day due to not being able to walk. She is currently using a special wheelchair and struggles to sit up.

She is a beautiful little girl who is genuinely always happy, & although talking is a problem, she always tries to communicate and laugh with a lovely smile.

She has up until now been in a cot, but has started to outgrow it and so requires a special bed that has sides and will lower up and down with ease.

Unfortunately it has been a struggle to secure the specific bed required to support Freyja. Acorns charity have been trying to support and source the funds but are struggling.

Freyja and her family are hugely grateful for any support that can be given whilst also raising awareness of FoxG1 Syndrome.

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