DOCTORS did not know if she would ever speak, walk or live a normal life after being diagnosed with a chromosome condition so rare that it doesn’t even have a name.

But now Ellouise Thompson, who is one of fewer than 50 people in the world who are known to have ‘3p26.3-25.3 deletion’, has delighted her parents by beginning to find her voice at the age of five.

Her mother Emma says this is largely thanks to the support they have received from a new charity in York.

Shine21, which was set up to support the families of young children with Down Syndrome, has provided speech therapy along with other learning resources to encourage the youngster from Newton Upon Derwent, near York, to communicate and develop in a mainstream school.

York Press:

Now Emma is saying thank you to the charity by organising a fundraising concert at a church in a village near York, featuring the York Philharmonic Male Voice Choir.

She said: “Having had their support and access to specialist speech therapy, Ellouise is finding her voice and her ability to communicate has gone from strength to strength.

“We have been humbled by the support Shine21 have offered to Ellouise and cannot rate this charity highly enough, we were lucky to find them and are very grateful they welcomed us in.

“Shine21 is growing significantly and is now looking for a new home to operate from to enable it to continue to grow and support more families. The charity concert will help raise some funds to enable shine21 to achieve this.

“Shine21 is a charity running across York and North Yorkshire who support children with Downs’ Syndrome who have included my daughter and are offering incredible support the their members that is second to none.

“This level of inclusion has had a significant and positive impact on Ellouise who at now five years old is starting to find her own voice (something we were told may never happen).”

York Press: Ellouise Thompson, who is now learning to speak, thanks to help from Shine21

Louise Mouncey, chair of Shine 21, said it was set up in the middle of the Covid pandemic with the aim of supporting families who have a child with Down’s Syndrome.

“We believe that parents are pivotal to their child’s development,” she said.

“That’s why we work closely with parents and carers to offer advice, support and reassurance – and to ensure they are adequately equipped to help their child reach their full potential.

“Shine21 supports families by providing sessions on learning Makaton; loaning resources; sharing knowledge; and signposting professional support.”

She said the charity was also passionate about raising awareness of Down’s Syndrome and working closely with local services and professionals to improve the care such children receive.

l The charity concert takes place at 7.30pm on Saturday, March 12 at St Helen’s Church in Wheldrake, with refreshments and a charity raffle available. Tickets costing £15 are available by going to