X Factor Danyl signs for charity showBy Sally Bryant
April 05, 2011
X Factor star Danyl Johnson is to head the bill in a fundraiser being organised to raise awareness of a rare genetic disorder.
Heather Emberson wants to highlight her son Callum’s condition and make thousands of pounds for the hospital and charity that have helped him.
And this week the date has been agreed with Danyl and the venue booked, so the stage is set for success.
On Wednesday, the X Factor finalist told getreading: “Ever since being at the Pride of Reading awards [last year] and meeting Callum, I have admired him and it is my honour to do this.
“He is so intelligent and warm, he has showed so much bravery but he doesn’t care about himself, he cares more about others.”
Young Person of the Year in last year’s Pride of Reading awards, Callum, 14, suffers from mitochondrial deletions Kearns-Sayre Syndrome (KSS).
He was the 23rd person in the UK to be diagnosed and there are only 360 cases in the world.
It affects every cell and can cause problems with eyesight and hearing, and muscle damage, particularly to the heart muscle.
The Little Heath School pupil, who lives with his family in Blewbury Drive, Tilehurst, had problems opening his eyes before an operation on January 21 gave him the ability to use his forehead to lift his eyelids.
Mrs Emberson said he was still on medication and needed two-hourly eye drops, but the difference it has made is “fantastic” and Callum is “over the moon”.
Sadly, though, she said “everything will deteriorate”, his leg muscles have got worse and he is currently a borderline case for a pacemaker – every time he has an anaesthetic, his heart is at risk.
But now the family have the fundraiser to look forward too, which will be at the Tilehurst British Legion Club in Downing Road on Friday, September 2. The aim is to make as much as possible for Great Ormond Street Hospital, to say thank you for the care it give Callum, and for the Make A Wish Foundation.
The fairy godmother charity grants wishes to children fighting life-threatening illnesses and gave Callum a day to remember with Formula 1 star Lewis Hamilton. As well as Danyl, Mrs Emberson has lined up Oxford band Cuckoo’s Nest and she is planning to hold an auction to bring in more funds.