Parents raise money to help daughter with cerebral palsy walk for first time

Esme dreams of one day dancing like her favourite ballerina

Violet O'Gorman
Tuesday 01 May 2018 10:56 EDT
Comments
Meet cerebral palsy sufferer Esme whose family are fundraising for for an operation

Your support helps us to tell the story

From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.

At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.

The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.

Your support makes all the difference.

The parents of a two-year old girl from Swindon, Wiltshire are fundraising £50,000 to help their daughter with cerebral palsy to walk for the first time.

Esme Kelly has the incurable condition spastic diplegia cerebral palsy – and in order to walk she requires the assistance of a frame. Due to bone deformities and stunted muscle growth, she also experiences constant leg pain.

However, Esme might gain the ability to walk if she is able to undergo life-changing surgery, called selective dorsal rhizotomy – which is unavailable on the NHS.

Esme Kelly
Esme Kelly (SWNS)

The procedure involves cutting damaged nerves in the lower spine, and would reduce Esme’s stiffness, giving her more freedom to walk.

In the hope of financing the surgery, her parents have set up a JustGiving page - which has currently raised more than £6,000 towards their £50,000 target.

Esme is very musical and loves the children’s musical Ballerina, which is about an 11-year old French girl whose dream is to be a ballet dancer, although she has no formal training.

Her parents say that Esme’s dream is to dance like her favourite Ballerina characters. Her seven-year old sister has taught Esme how to do the basic ballet move of a plié, which she does by standing on her tiptoes while using her walker.

"Esme has learned how to do a plié with her walker," said her mother, Charlotte. "Her dream is to practice ballet and having the operation would help her achieve it.

"She loves soft play and going to the farm and doesn’t let the condition hold her back but it will get harder as she ages.

"Esme goes swimming every Monday with disabled children and instructors struggle to see any sign of disability when she's in the water - she's very capable."

Esme might gain independence if she is able to undergo life-changing surgery
Esme might gain independence if she is able to undergo life-changing surgery (SWNS)

Figures from cerebralpalsy.org.uk show that an estimated one in every 400 babies born in the UK has a type of cerebral palsy. Cerebral Palsy is a term used to cover various neurological conditions, which are a result of injury to the brain before, during, or shortly after birth. The condition can affect coordination, muscle control, reflexes, posture and balance.

Symptoms of the condition, such as delayed development and spasms, often appear in early childhood. Esme, who was born five weeks early, spent 11 days under observation in a specialist care unit after birth, where she was not reported to have any health problems.

Esme’s parents were told of her condition just before Christmas 2016, after noticing her physical traits were developing slowly.

Speaking about the diagnosis, her mother said: “It’s had a massive impact on the family. We never expected to be faced with this. You never do. But we know we have to be strong for our little girl to have the best possible life.

“We have to do daily stretches to help with her muscles. Where she cannot move freely we have to carry her a lot of the time.

"This isn’t the life Esme was destined for - she wants to walk and we will do all we can to help her.”

To help reach their £50,000 target, Esme’s family are holding various fundraisers including a skydive in July, and a family fun day in June.

Her dad, Stephen, will also be taking part in the Three Peaks Challenge in August.

Join our commenting forum

Join thought-provoking conversations, follow other Independent readers and see their replies

Comments

Thank you for registering

Please refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in