Party in memory of Corby boy raises thousands for children with rare diseases

Luke with mum Joni and sister Hollie
Luke with mum Joni and sister Hollie
  • Groups and individuals around the county took part in #wearblueforluke to raise awareness of rare genetic diseases in children
  • Although Luke’s condition prevented muscle development, he wowed everyone by learning to walk and talk
  • The party, which was meant for Luke, was held in his memory to raise money for MPS Society

A party in memory of a brave Corby boy who amazed doctors with his battle against a rare disease has raised more than £2,000 for charity.

Luke MacDonald, the nine-year-old behind the #wearblueforluke campaign, which had people across the county posting their selfies dressed in blue to raise awareness of his condition barely a month ago, passed away on May 26.

Although he had been diagnosed with a severe strand of Sanfilippo Syndrome, an enzyme disease that prevents muscle development, he stunned doctors, family and friends by gradually learning to walk and talk.

But after his family, who live on the Danesholme estate, were recently told Luke had two months left to live, they organised a party to help raise money for the MPS Society – a charity that supports families affected by rare genetic diseases – and create some last happy memories with their little boy.

Sadly, Luke died days before the party.

One of the organisers of the event last Friday (June 5) at The Hazel Tree pub in Greenhill Rise, family friend Roxanne Martin, said: “The party went so well and we had an amazing turn-out – even Luke’s favourite cartoon character, Spongebob Squarepants, made an appearance.

“Luke’s cousin made commemorative ribbons, there was a cake sale, we held a raffle and received a lot of generous donations.

“While we are still waiting to count the exact total, I think we raised around £2,500.”

Mrs Martin and co-organiser Natalie Benett also thanked everybody who took part in #wearblueforluke day, including pupils at Rockingham Primary School, Beanfield Primary School and Kettering-based Osprey Lettings.

She first met Joni, Luke’s mother, after spotting her mention of Luke and the charity on Facebook and offered her support in taking the campaign further.

Luke was such a brave little boy – he took his illness in his stride and he could always raise a smile.

Roxanne Martin

She said: “Luke was such a brave little boy.

“He took his illness in his stride and he could always raise a smile.

“His whole family are amazing and I have never once heard them complain throughout Luke’s journey.

“They always saw Luke as a gift.

“The party was supposed to create some last happy memories for Luke and it’s a terrible shame that that didn’t happen.

“But the event went very well and we would like to thank everyone who got involved.”