School holds dance-athon for pupil with chromosome disorder
PUBLISHED: 12:00 29 June 2017
A school in Nailsea held a six-hour dance-athon for a year six pupil who suffers from a rare chromosome disorder.
Golden Valley Primary School put on a day of dancing and raised £1,633 for the charity Unique, which supports people suffering from the disorders.
Alice Groves has part of one of her chromosomes missing and could be the only child in the world with the particular condition.
Her parents, David and Judy Groves, said: “There is no formal name for her diagnosis, but it can be seen when her DNA is viewed under a microscope.
“Having a child with a unique medical condition is very isolating for parents.
“The medical profession has no information about what illnesses are attached to Alice’s genetic profile or what her prognosis will be.
“When Alice was young we were told that she would never crawl, walk, talk or eat.
“Alice has been very developmentally delayed, but with the help of therapy, school and her determination she has proved this prognosis wrong and does all of these things, although she still has difficulties in many areas.
“The charity Unique has given us access to support from other families with children with genetic deletions, including direct contact with a family with a girl of Alice’s age with a similar chromosome three deletion.
“We have learned to embrace Alice’s future and tackle it with ambition.”
Pupils danced non-stop from 9am-3.30pm with each class dancing for 30 minutes.
The routines were chosen by Alice and the fundraiser ended with a dance in the playground involving the whole school and some staff and parents.
Debra Dean, deputy headteacher at the school, said: “Alice Groves is now in her final term at Golden Valley and has been an inspiration to us all.
“She is constantly enthusiastic and happy and particularly loves her music and dance.”
Alice’s dad David added: “We are very grateful to the school for all the effort they have put in to support Alice since she started there and it was amazing the whole school was involved with the dance-athon.
”She was not expected to stay in mainstream school but instead she’s thrived. They’ve done a brilliant job.”