Hurler Syndrome: Appeal launched in memory of 2-year-old Peterborough boy Riain
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The family of a 2-year-old boy who died after being diagnosed with a rare genetic condition have launched an appeal to raise money in his name.
Riain Bloomfield died earlier this month after a battle with Hurler Syndrome. The condition affects around one in 100,000 people, and people diagnosed with Hurler Syndrome typically have a life expectancy of about 11 and a half years.
The rare condition is a genetic disorder that results in the build up of large sugar molecules. The inability to break down these molecules results in a wide variety of symptoms caused by damage to several different organ systems, including the nervous system, skeletal system, eyes, and heart.
The brave youngster had received treatment at both Peterborough and Great Ormand Street Hospitals.
He had recently had a bone marrow transplant, in a bid to cure the issues – but sadly he fell ill, and passed away on November 9.
Now his heartbroken family have started a fundraising appeal to ensure they can give him ‘the best send off possible.’
Mum Nikki Keating said: “Our beautiful boy Riain had a rare genetic condition called Hurler Syndrome.
"Riain had a bone marrow transplant in August to try and eradicate this disease. This went well. Unfortunately Riain spiked a temperature at home and had to go to our local hospital before being transferred back to great Ormand street hospital with a blocked Hickman line in October.
"Riain picked up pneumonia and was taken into Picu (Pediatric Intensive Care Unit) after four weeks and then ventilated in the hope to give him a chance to rest to recover.
"Sadly Riain got extremely poorly and wasn’t able to recover, so we need to give him the best send off possible.
"This is not something we had ever thought about so we were not able to save or plan. We thought our beautiful boy would recover and be with us.”
For more information, or to donate to the appeal, visit https://www.gofundme.com/f/riain-bloomfield