Hannah Bullock is organising the big day in Torrington after her two-year-old daughter, Lily, was diagnosed with a rare genetic condition.

The mother of a child with a rare chromosone disorder is organising a family fun day to thank the charity which has helped them.

Hannah Bullock, from Torrington, is hoping to raise awareness of her daughter Lily’s genetic condition, while raising money for the charity Unique.

She has organised a fun day for August 27 at Torrington Rugby Club, with plenty of family entertainment, live music, stalls and games from 2pm-6pm.

Lily, aged two, has had an endless string of hospital appointments and scans to try and obtain a diagnosis since she was born.

Hannah said she ‘knew something wasn’t right’ when Lily was hospitalised with bronchiolitis as a baby – and she has since developed a ridge on her forehead and is very small for a child her age.

In April Lily was finally diagnosed with a 9p-chromosone deletion – meaning her ninth chromosone is missing a piece.

The condition is so rare, Hannah said the future for Lily as she grows up is largely unknown, but she is remaining optimistic.

She said: “It’s been a struggle, but Lily is bright and I think she will walk and talk – just in her own time.

“Before she was diagnosed I never even knew these genetic disorders existed so it has been interesting to learn about it.

“I’m hoping with our family fun day we can also spread awareness of these things.”

The fun day will raise money for Unique, a support group for children with rare disorders.

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