Bank Holiday fair fundraiser for Aylesbury Vale girl, 2, with extremely rare neurological condition

A fundraising event has been launched to support an Aylesbury Vale girl with an extremely rare neurological condition.

Two-year-old Mara Hook from Whitchurch has a GABBR2 gene mutation which affects her ability to communicate and speak.

Mara also has autistic behaviours and is taking longer to reach certain development milestones than other children her age, issues which are linked to the mutation.

Her father Richard was told there are only two known cases of the mutation in the UK. An international Facebook group the Hook family have joined has identified just 15 mutations matching Mara’s, and the oldest child with this condition is just 11.

Her family have been seeking financial support all year to help get Mara the treatment they believe will substantially improve the quality of her life.

A fundraising page has been set up here which, at the time of writing, has seen hundreds of residents generously donate over £12,000 to support the family. They are hoping to raise £16,000 to go to Panama so Mara can receive more stem cell treatment. The Hooks asked for financial help getting over to Panama as they are already forking out big sums for private treatment.

Now a traditional fair – titled Mara’s Fair – has been arranged in the village near Aylesbury for this coming Bank Holiday Monday (MAY 6) And all proceeds will go towards the youngster’s cause.

The fair is being held from 12pm to 4pm at Whitchurch Recreation Ground. Families can look forward to an afternoon of live entertainment and fun – and anyone is welcome, including pets.

Entry is free and it will be cash only for the activities and food and drink.

Among the activities confirmed for Monday’s fair are live music, an interactive theatre group, tug of war games and a coconut shy. There will also be a children’s author in attendance, activity tents, stalls, a raffle, children’s games, a tea and cake tent, coffee, pizza and ice cream vans as well as a barbeque.

"We have spoken to many people at the clinic but also other parents who believe the stem cell treatment can be performed many times,” Mara’s dad Richard wrote earlier in 2024.

"The gains are permanent and life changing. We owe it to Mara to try everything in our power to improve her life.”

Richard also mentioned how a previous trip to the Stem Cell Institute last July dramatically improved Mara’s condition.

He said: “Since returning in July we have seen some amazing improvements in her cognitive ability, physical strength and most startlingly her eyesight. She has for the first time in her life been able to fix and follow, to look people in the eye.”