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Family appeal for £1,300 to buy sensory equipment for son with Menkes Disease

Owen, age 7, from Desborough, in Northamptonshire, was born with Menkes Disease NNL-140307-131938001

Owen, age 7, from Desborough, in Northamptonshire, was born with Menkes Disease NNL-140307-131938001

An appeal has been launched to help a seven-year-old boy from Northamptonshire born with a rare genetic disorder caused by copper deficiency.

Owen suffers from Menkes Disease, which is characterised by growth failure and extensive neuro-degenerations and follows progressively degenerative path involving several organs of the body, but especially the brain.

Owen’s parents, Michelle and Daniel, are determined to make every day as special as possible for their son as they know that his time could be limited.

Having recently discovered the calming benefits of Sensory Equipment, they are working with Caudwell Children charity to raise the £1,300 needed to secure a ‘Mixed Light Sensory Pack’ for Owen.

The new equipment, which will be procured with fundraising support from Caudwell Children, the national charity that provides practical and emotional support to disabled children and their families, will be a huge help to Owen.

Michelle said: “Despite being severely mentally and physically disabled, Owen is a very happy boy.

“With everything that Owen goes through, he always tries to come out smiling and tries to enjoy life as much as he possibly can. He really enjoys the lights, images and bubble tubes, they are a distraction from his pain. Owen is unable to hold and play with toys so this equipment will make a huge positive difference to his life.”

Trudi Beswick, chief executive of Caudwell Children, said: “We need the local community to support Owen’s appeal. Unbelievably, there are on average 100,000 disabled children waiting for appropriate equipment, some of which is not supported through statutory funding. The Mixed Light Sensory Pack will benefit Owen immeasurably and will increase his health and wellbeing.”

Caudwell Children are asking local companies and individuals to pledge their support and take on the challenge to raise £1,300 for this much needed equipment.

If you would like to hold a fund-raising event, contact Stacey Smalley, community appeals fund-raiser, on 07812 988905 or email stacey.smalley@caudwellchildren.com
Donations can be made to Owen’s appeal by visiting his Just Giving page at www.justgiving.com/Owensappeal
You can also donate via Text Giving - Text £(amount) to OMSA47

To find out more about Caudwell Children visit www.caudwellchildren.com

 

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