Why did you lie to me, Daddy Boy, 8, devastated to find his illness is terminal after going on Google
Schoolboy discovered progressive condition Duchenne muscular
dystrophy would eventually kill him
'Since then he's had several nightmares about it and always calls us in for a cuddle', says father
An eight-year-old boy was horrified to discover his illness was terminal after he searched for it on Google while his parents were away.
Dominic Stacey knew he had Duchenne muscular
dystrophy, which has largely confined him to a wheelchair. But his parents had always been up beat about the condition to try and protect him.
But he found out the disorder would progress and eventually cause his death after searching on the internet while his parents were on a weekend away.
'We explained everything': Dominic Stacey with his son Dominic Junior, who found out his condition was terminal on the internet
He discovered the information about his illness from Google while his parents were away
Dominic Senior, 33, and wife Caroline, 42, returned home to find their son demanding to know why they had lied to him.
The schoolboy, affectionately known as Lil Dom, has suffered from frightening nightmares ever since the terrible revelation and frank conversations about this mortality.
Duchenne's causes muscle degeneration, difficulty walking, breathing, and eventually death.
Mr Stacey, a youth worker, said: 'We've always drip-fed him information about the condition which he calls his 'tired legs'.
Dominic with his sisters Kate and Georgia: He has a progressive condition that wastes the muscles. Duchenne's is inherited but usually only affects boys
WHAT IS DUCHENNE'S
Duchenne muscular dystrophy is an inherited disorder that causes progressive muscle weakness.
It usually only affects boys (around one in 3,500), although girls can carry the defective gene.
Although not apparent at birth symptoms appear in early childhood.
Boys with Duchenne's will have difficulty with walking, jumping and climbing stairs.
The disorder is diagnosed via a blood test and muscle tissue sample.
Sufferers are likely to need increasing help and treatments from the age of nine. Walking becomes difficult and a wheelchair is usually needed by the age of 12.
As patients go through their teenage years they are more likely to suffer from complications such as chest infections.
Most most people with Duchennes survive well into their 20s and sometimes longer. The eventual cause of death is usually a severe chest infection at the stage when lung function is already poor.
'He understands the effects of the condition but it's very hard to explain to someone so young.
'He has asked us in the past if it would kill him and we've always told him that no one knows when they're going to die.'
Dominic, of Holsworthy, Devon, said the aftermath of the discovery has been heartbreaking for the whole family.
He said: 'He came up to me and asked me why I had lied to him. He had looked up the disorder online and found out that it will eventually kill him.
'We sat him down and explained everything. It was one of the hardest conversations I've ever had. We were all in bits.
'Since then he's had several nightmares about it and always calls us in for a cuddle.
'He just wants to know we're here for him. One night he asked me to find a cure for his condition and that hit me like a sledgehammer. I wanted to say yes, but it was so hard.'
Dominic said his son very rarely talks about his condition now and has received a lot of help from his palliative care nurse.
Lil Dom said he still leads a normal life for a young boy.
He said: 'I like history and maths at school and at home I enjoy drawing and playing on my Xbox.
Dominic, known to his friends as Lil Dom, said he had a huge appetite and needed to eat to keep his strength up
'I like playing with my friends but I can't do it for too long because my legs start to hurt.
'Luckily my school let me have a
sleep in the afternoons if I'm tired. I also have to eat a lot to keep
my strength up. I'm an eating machine.
'The other day I had a whole seafood platter all to myself.'
Dominic and Caroline, a psychiatric nurse, have three other children: Cate, six, Georgia, four and two-year-old Tahlia.
Around 2,500 people in the UK suffer from Duchenne, which is most common among boys.
Dom also suffers from a form of epilepsy known as absent seizures,
which means he can have up to 20 memory blanks in one day.
the past four years Dominic has organised fundraising events in aid of Duchenne, including swimming with sharks and a
mass Chinese lantern release.
Lil Dom added: 'He's done some crazy
things like dress up as BA Baracus and wear a silly mankini, I thought
both of those were really funny.
'I like being at the events. I was sat on top of my friend's car to see all the lanterns released last year, it was great.
'I was amazed so many people turned up, it was really nice that they supported the charity.'
family have also thrown their support behind a song called 'Nobody Knows
Their Time,' which has been written by Dominic's friend, Mark Emmins.
song is released on digital download on March 4 and is available on
iTunes for 99p, with 40p from each sale going to Duchenne Now.
To see the work of the charity, click here.