Young boy with rare genetic condition going to Amsterdam for medical trial

Edison ‘Eddie’ Rose, seven and from Hevingham, with his mum Sabrina, dad Matt and sister Clara, 4.

Edison ‘Eddie’ Rose, seven and from Hevingham, with his mum Sabrina, dad Matt and sister Clara, 4. - Credit: Supplied by the family

A brave boy with a rare genetic condition is heading to Amsterdam to take part in a potentially lifesaving medical trial.

And when seven year old Edison ‘Eddie’ Rose, from Hevingham, makes the journey on June 4, he knows he has the love of hundreds of people.

More than £2,000 pounds has already been raised to help fund Eddie’s journey, and this week children and staff at Hevingham Primary School - where he attends - and its partner primary school in Marsham are taking part in a ‘pedal for Eddie’ fundraiser on a stationary bike.

Edison ‘Eddie’ Rose, seven and from Hevingham, with his mum Sabrina, dad Matt and sister Clara, 4.

Edison ‘Eddie’ Rose, seven and from Hevingham, with his mum Sabrina, dad Matt and sister Clara, 4. - Credit: Supplied by the family

His parents, Sabrina , 43, and Matt Rose, 41, said they were overwhelmed with the support that had been shown for their son. 

Mrs Rose said: “We’re so truly grateful to everyone who has donated. Without them, we wouldn’t be able to get him out there.”

Eddie was diagnosed with leukoencephalopathy with vanishing white matter when he was five. The condition causes a deterioration of the nervous system’s white matter.

It means Eddie often has to use a wheelchair, and the condition means a life expectancy of five to 10 years from onset. 

Edison ‘Eddie’ Rose, seven and from Hevingham, with his mum Sabrina, dad Matt and sister Clara, 4.

Edison ‘Eddie’ Rose, seven and from Hevingham, with his mum Sabrina, dad Matt and sister Clara, 4. - Credit: Supplied by the family

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Eddie will be one of just three children taking part in the initial trial at Amsterdam’s university hospital led by Professor Marjo van der Knaap, a world expert on white matter disorders. 

It is hoped the trial of a hypertension medication - lasting initially eight weeks - will lead to a longer life expectancy and better quality of life. 

Mrs Rose said: “He can’t keep up with his friends, and that’s what he’s hoping to get out of this trial. Every day is different for children with this disease. He does so well to be in school daily. We don’t stop him from doing anything - if he wants to do PE he does it.”

Jen Brooker, the school’s nurture lead, said: “Eddie is a bright and cheerful young man who brings smiles to everyone’s faces every day, despite his condition. 

“He is bold and brave, ensuring that he keeps up with his peers as best he can. 

“The children in his class are extremely supportive of Eddie and include him in all activities, supporting him as best they can.”

To contribute to Eddie’s appeal, visit gofund.me/927c2b78.

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