Derbyshire nursery hosts fundraising day for children with rare neurological disease

Busy Bees nursery in Barlborough hosted the event to mark Batten Awareness Day.

Batten disease is a rare degenerative genetic disorder, currently affecting between 30-50 children in the UK – including two youngsters at the nursery.

The money raised will be going to the Batten disease family association (BDFA). The charity works to support families affected by the condition as well as increasing awareness and funding research.

The charity has become so important to the nursery after two of their children were diagnosed with the condition last year.

Holly Weston, aged four and her brother Max aged two, who both started attending Busy Bees when they were nine months old, were diagnosed in December 2022.

Their parents Emily and James Weston have also set up a Gofundme page which has raised well over £11,000 for the charity.

Talking about Busy Bees nursery mum Emily said: “They have been absolutely brilliant. They’ve been such a support network for me and James, and they’ve gone above and beyond in the support they have given our family.”

Busy Bees centre director, Katherine Brown says that Holly, Max and their parents are ‘part of the Busy Bees family.’

She added: “They’ve got friends here and other parents who have really rallied around, and we try to do so much for them. We’re all about supporting them and making sure that, if there’s any sort of burden and we can take it off of them then we will.”

Children made orange juice and biscuits, as well as orange-themed messy play. A raffle was also drawn with prizes donated by parents and local business. A three-legged race was held to help children understand what it’s like to not be in complete control of their bodies. Staff wore orange t-shirts with the slogan: ‘in this nursery, no one fights alone’, and £2,000 was raised on the day with donations still being made.

To donate to BDFA visit Holly and Max’s Gofundmepage.