River Wardley celebrates 10th birthday

A little boy from Milnrow with a life-threatening genetic condition celebrated his 10th birthday on 15 April.

Ten-year-old River Wardley was one of the first people in the world, and the first child in the UK, to be diagnosed with suffering from a life-threatening genetic condition with an extremely rare mutation on his CNK SR2 gene, which causes seizures, and intellectual, attention and language deficits. Around 40 people worldwide are known to have the condition.

He also has central and obstructive sleep apnoea, hypermobility syndrome, Sensory Processing Disorder, autism, ADHD and uncontrolled epilepsy.

His family had originally planned a sensory play centre, magician and cake but due to the lockdown, were forced to change their plans.

His mum, Jeni, said: “We turned a birthday frown upside down after we had to cancel River’s initial birthday celebrations due to the pandemic.

“Every year is such a celebration due to his condition being life-threatening and we make the most of the time.”

The family held a special beach party for River and his siblings to the summer tune of the Vengaboy’s classic, We’re Going To Ibiza.

 

 

‘Flying’ first class on some special deckchairs and enjoying some complementary airline snacks, the family touched down in no time at all – ready to party on a bespoke sensory sand pit beach.

Jeni added: “We are so happy River has made it this far. Every day with him is a blessing.”