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Appeal to help Desborough youngster

Desborough youngster Owen Morrison, who has a rare condition called Menkes Disease

Desborough youngster Owen Morrison, who has a rare condition called Menkes Disease

 

A charity is asking people to help improve the life of a young boy born with a rare genetic condition by helping to raise £1,300 for special sensory equipment.

Owen Morrison, seven, from Desborough, was born with Menkes Disease, a disease caused by copper deficiency. The condition is characterised by limited growth and deterioration of the nervous system.

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

The family say they recently discovered the calming benefits of sensory equipment and are working with the Caudwell Children charity to raise £1,300 for a mixed light sensory pack for Owen.

Michelle said: “Despite being severely mentally and physically disabled, Owen is a very happy boy. With everything he goes through, Owen always tries to come out smiling and tries to enjoy life as much as possible. He enjoys the lights, images and bubble tubes, they are a distraction from his pain. He is unable to hold and play with toys so this equipment will make a huge positive difference to his life.”

Caudwell Children is asking companies and individuals to help raise £1,300 for the equipment.

A spokesman for the charity said: “Please pledge your support and help to raise £1,300, this can be through dress down days, cake sales, sweepstakes, sponsored bike ride/walk anything you and your friends and colleagues enjoy doing.”

People can contact community appeals fundraiser Stacey Smalley on 07812 988905 or email stacey.smalley@caudwellchildren.com.

Owen’s family has set up a 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.

Discovery

Menkes Disease was identified by scientist John Hans Menkes in the 1960s.

The disease causes copper deficiency in the body, which in turn leads to weak muscle tone, seizures and developmental delay.

The condition mostly affects boys and sufferers tend to have a life expectancy of between three and five years.

Children with the condition are also often born prematurely.

 

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