My story

Four-year-old Connor just wants his brother to walk

A four-year-old from South Wales is trying to raise £60,000 to help his disabled twin brother walk independently by paying for a ground-breaking operation in America.

Brothers Connor and Cieran Jones from Port Talbot were born twelve weeks prematurely and spent the first 3 months of their lives in the Special Care Baby Unit in Bridgend.

Following their first birthday Connor was given the all-clear, where as Cieran was diagnosed with Spastic Diplegia Cerebral Palsy; a type of brain damage which affects his mobility and means he has to use a wheelchair or walking frame.

The future for Cieran looked bleak, with a multitude of operations and botox injections expected to try and ease the rigidity of his muscles to try and make him more comfortable. That was until Mum, Emma, discovered a ground-breaking operation available in the United States which was releasing muscle tension in Cerebral Palsy sufferers and, in some instances, allowing them to walk independently for the first time.

Emma commented on the discovery: “It is really heart wrenching to consider the prospect of operation after operation and endless stays in hospital for my beautiful little boy. When I read about this treatment and then discovered how successful it had been for other children, I knew it would save Cieran lots of pain and discomfort as he get older and made an appointment to ask our specialist about it.”

The treatment is called Selective Dorsal Rhizotomy and involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord. The complicated procedure reduces spasticity and it becomes easier for patients to increase strength with therapy and exercise. Children who have received the treatment can often start types of exercise that were impossible before.

The operation is not currently available on the NHS and the Centre for Cerebral Palsy Spasticity in St Louis, Missouri are the World’s leading specialists.

Now, four-year-old Connor is fundraising with his Mum, Emma, and Dad, Neil, to pay for the treatment at the St Louis Children’s Hospital but needs to raise £60,000 in just 3 months.

Emma added: “Connor is incredibly close to his brother and looks after him, pushing his wheelchair or helping him get around. He has been actively involved in the fundraising we have done so far and I know he would do anything to help his brother have a better life. As twins they have a very special bond and I know Connor will be as happy as us if we reached our target of getting Cieran to America.”

National charity, Caudwell Children, is supporting Cieran and other children like him by raising money to fund ground breaking treatments and physiotherapy which can help children with Cerebral Palsy walk independently for the first time.

Charity CEO, Trudi Beswick, commented: “This type of operation has a proven track record of improving the lives of children with Cerebral Palsy and we are pleased to help try and raise the money they need. We need to raise a lot of money in a short period of time to give Cieran the independence he deserves, so I urge anyone who may be able to help to contact the Charity.”

Anyone interested in helping the Cieran Jones Appeal is asked to contact Caudwell Children on 01782 600114 or to donate online visit www.justgiving.com/cieranjonesfund

 

Important note to donors: As long as Cieran requires funds to pay for treatment in the United States, Caudwell Children will manage all payments of funds for the family. All donations made will be added to the Caudwell Children SDR Fund and will be used to help Cieran and other children with Cerebral Palsy in the UK receive this life-changing treatment.

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Caudwell Children

Caudwell Children

Charity Registration No. 1079770

Caudwell Children transforms the lives of sick and disabled children across the UK. The Charity provides equipment, treatment and therapies to individual children. Our Destination Dreams programme provides an organised holiday for children fighting life threatening conditions. The Charity has changed the lives of children with over 160 different medical conditions.

Donations 71

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noels sponsor money u know him hes allways late

Donation by christopher latham on 03/03/11

£310.00

+ £87.44 Gift Aid

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good luck little man

Donation by christopher latham on 04/11/10

£1,250.00

+ £352.56 Gift Aid

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we are so proud of you,all our love sammy and aunty pam xx

Donation by samuel williams on 04/11/10

£70.00

+ £19.74 Gift Aid

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Good Luck Cieran- With Love from all staff at Limo Broker Ltd, Coach Brokers Ltd and Cars for Stars.

Donation by 2/11/2010 on 02/11/10

£150.00

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all good cousin x

Donation by dean corrick on 30/10/10

£350.00

+ £98.72 Gift Aid

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Donation by ed fitzgerald on 13/10/10

£100.00

+ £28.21 Gift Aid

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Congratulations to Cieran Jones with his successful operation in the U.S. Our prayers and thoughts go out to Cieran Jones, family and friends!

Donation by Baglan Community Church on 13/10/10

£150.00

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Match funding for John Rees's haircut donated by Masco UK Window Group c/o Griffin Windows. Good luck with your operation and recovery.

Donation by Gwyn Evans on 12/10/10

£460.00

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This is a little extra raised by some lovely girls by staying awake for 24 hrs! well done girls, and good luck cieran!!! xxxxx

Donation by Helen Jones on 07/10/10

£536.00

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I really hope that your trip to the US is s great success. You must be very proud of your brave little boys. Janet (friend of Sara foley).

Donation by Janet Creighton on 01/10/10

£20.00

+ £5.64 Gift Aid

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On behalf of the babies and toddlers at Busy Bees Nursery Cardiff. Take care and lots of love

Donation by sarah Foley on 01/10/10

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good luck in the usa love nia xx

Donation by carl lovett on 30/09/10

£55.00

+ £15.51 Gift Aid

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Money from horse racing night

Donation by Chris Banfield on 29/09/10

£60.00

+ £16.92 Gift Aid

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Was a pleasure, a worthy cause, all thebest

Donation by Mike Healy on 22/09/10

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good luck from everybody an aberavon quins rfc .

Donation by paul miller on 22/09/10

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Good luck, every ones with you

Donation by Anthony JONES on 21/09/10

£50.00

+ £14.10 Gift Aid

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good luck !!!

Donation by donald regan on 14/09/10

£2,400.00

+ £676.92 Gift Aid

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donation from everyone at Spar.

Donation by emma jones on 13/09/10

£1,000.00

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Going to a good cause

Donation by Steve Corrick on 09/09/10

£165.50

+ £46.68 Gift Aid

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special thanks to kevin lane the landlord,darts section and all the regulars.

Donation by amazon pub on 07/09/10

£300.00

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good luck from the staff and customers at briton ferry ladbrokes xxx

Donation by laura latham on 06/09/10

£144.00

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good luck !

Donation by Anonymous on 03/09/10

£4,020.00

+ £1,133.85 Gift Aid

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Our blessed prayers, thoughts & gestures of goodwill go out to young Cieran Jones and family.

Donation by Baglan Community Church on 01/09/10

£112.00

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Good Luck in America and thanks to everyone that sponsored and supported me.

Donation by Vaughan Harrett on 31/08/10

£600.00

+ £169.23 Gift Aid

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Good luck in America!

Donation by Sarh Sharp & Family on 31/08/10

£10.00

+ £2.82 Gift Aid

Donation summary

  • * Online donations£37,846.50
  • Offline donations£27,725.00
  • Text donations£0.00
  • Total raised£65,571.50
  • Gift Aid£9,735.71

* Charities pay a small fee for our service. Find out how much it is and what we do for it.