Doncaster MP joins charity funding walk for girl with terminal genetic disease

Five year old Beatrice Cieslik was first diagnosed with CLN2 type Batten disease - a rare degenerative condition which causes seizures, blindness, dementia, and difficulty with mobility and speech –two years ago.

Doncaster dance class tutor Caroline Barratt organised a sponsored walk in Sandall Park for the Kirk Sandall youngster to raise awareness about the condiiton and bring in funds for the BDFA (Battens Disease Family Association) which supports families and children with Batten's disease.

And Doncaster Central Labour MP Sally Jameson was among those joining the event.

She said: “I absolutely loved attending Bea’s Unicorn Parade at Sandall Park to raise awareness and money for the Battens Disease Family Association.

"It was fantastic to spend time with Bea’s family and friends and join the unicorn parade.”

"Thanks to Sandall Park and Little Movers Doncaster for hosting.”

Bea attends the dance classes every Saturday at Little Movers.

Caroline said: “She is developing new skills and enjoys everything alongside her peers.

"She receives a synthetic medication through a brain infusion every fortnight at Manchester Children's Hospital.

"The treatment is holding off the symptoms of the disease from progressing so quickly.

"The treatment is doing the same for the other 39 children that have Batten's Disease in the UK. However, the funding for this treatment to continue for these children has been pulled away and treatment will stop in May.

“If the treatment stops, Bea's life will become very different, very rapidly. She will lose her sight, then her ability to talk and swallow. Seizures will increase and she will lose her mobility.

"Bea's life expectancy is 12 years even with the treatment so it is vital, that while she is young this treatment continues.”

"As Bea's dance teacher, I am going to help the fight to raise awareness and raise money to keep Bea dancing, moving and playing for as long as possible.”

Participants walked two laps of the lake at Sandall Park to help draw in vital funds for the BDFA.