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

Esme dreams of one day dancing like her favourite ballerina

Meet cerebral palsy sufferer Esme whose family are fundraising for for an operation

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

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

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.

Register for free to continue reading

Registration is a free and easy way to support our truly independent journalism

By registering, you will also enjoy limited access to Premium articles, exclusive newsletters, commenting, and virtual events with our leading journalists

Please enter a valid email
Please enter a valid email
Must be at least 6 characters, include an upper and lower case character and a number
Must be at least 6 characters, include an upper and lower case character and a number
Must be at least 6 characters, include an upper and lower case character and a number
Please enter your first name
Special characters aren’t allowed
Please enter a name between 1 and 40 characters
Please enter your last name
Special characters aren’t allowed
Please enter a name between 1 and 40 characters
You must be over 18 years old to register
You must be over 18 years old to register
Opt-out-policy
You can opt-out at any time by signing in to your account to manage your preferences. Each email has a link to unsubscribe.

By clicking ‘Create my account’ you confirm that your data has been entered correctly and you have read and agree to our Terms of use, Cookie policy and Privacy notice.

This site is protected by reCAPTCHA and the Google Privacy policy and Terms of service apply.

Already have an account? sign in

By clicking ‘Register’ you confirm that your data has been entered correctly and you have read and agree to our Terms of use, Cookie policy and Privacy notice.

This site is protected by reCAPTCHA and the Google Privacy policy and Terms of service apply.

Register for free to continue reading

Registration is a free and easy way to support our truly independent journalism

By registering, you will also enjoy limited access to Premium articles, exclusive newsletters, commenting, and virtual events with our leading journalists

Already have an account? sign in

By clicking ‘Register’ you confirm that your data has been entered correctly and you have read and agree to our Terms of use, Cookie policy and Privacy notice.

This site is protected by reCAPTCHA and the Google Privacy policy and Terms of service apply.

Join our new 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