Wear it blue day for Corby boy, nine, who has two months to live

Luke MacDonald with his mother Joni and sister Hollie
Luke MacDonald with his mother Joni and sister Hollie

People all over Corby will be wearing blue today to raise awareness of a rare disease that has given a nine-year-old boy only two more months to live.

Luke MacDonald, who lives on the Danesholme estate, was eventually diagnosed with a severe stand of Sanfilippo Syndrome, a type of enzyme disease, after he was born deaf and struggled to develop muscles and movement.

But, despite proving doctors wrong by gradually learning to speak and walk, he has since deteriorated and was recently given a two-month prognosis.

So today his friends and family will be marking #wearblueforluke day, their own branch of national Wear It Blue day organised by the CPS Society, which aims to raise awareness and support families affected by rare genetic diseases.

Luke’s mother, Joni Giles, said: “The rate that Luke deteriorated was absolutely heart-breaking for everyone who knows and loves him.

“He was once able to play on the trampoline, play with his sister Hollie and communicate with everyone, but now he is completely bed-ridden. His body is suffocating itself.

“This awful disease has stolen Luke away from us all.

“We have always known that there is no cure for him, we just knew we had to manage it and cope as best we could.

“Luke’s prognosis was the worst possible news we could ever imagine.”

In a bid to make Luke’s time with his friends and family as comfortable and enjoyable as possible, family friends Roxanne Martin and Natalie Bennett have helped to organise a special blue party at The Hazel Tree Pub in Greenhill Rise in Corby on Friday, June 5.

The event, from 4.30pm until late, is open to anyone and will include face-painting, a bouncy castle and a disco.

Miss Martin said: “The proceeds of the day will all go to the family, to make sure the time he has left is more bearable, and any leftover will go towards covering funeral costs.”

Miss Giles said: “We are hoping to raise as much awareness as we possibly can, and we are going to throw Luke the biggest, bestest, bluest party this town has ever seen.”

To make a donation to Luke and his family, visit www.gofundme.com/ua363ks.

To find out more about wearing it blue today, or about the party in June, visit the #wearblueforluke page on Facebook.