Τετάρτη, 6 Ιουνίου 2012
Dominic Stacey, 8, googled to find his muscular dystrophy is terminal
When their eight-year-old was diagnosed with terminal illness, Dominic and Caroline Stacey thought it best to keep the tragic news from him. They had, however, not reckoned on Dominic Junior’s inquisitive nature. He looked up the disease he called ‘tired legs’ on Google and discovered the truth. Lil Dom – as he is nicknamed – then confronted his parents and asked why they had not told him, and had been so upbeat about his condition, Duchenne muscular dystrophy. The rare disease causes muscle degeneration and difficulties with walking and breathing that eventually lead to death. Average life expectancy is 25. Mr Stacey, a 33-year-old youth worker, said the aftermath of Lil Dom’s discovery was traumatic for the family. 'He came up to me and asked me why I had lied to him,’ he said. ‘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. 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 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.' 'He understands the effects of the condition but it’s very hard to explain to someone so young.’ Mr Stacey said his son had asked him in the past if the illness would kill him – and he had replied that no one knows when they’re going to die. Dominic, who uses a wheelchair, said he led a normal life for a young boy. ‘I like history and maths at school and at home I enjoy drawing and playing on my Xbox,’ he added. '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 42-year-old 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. Dominic also suffers from a form of epilepsy known as absent seizures, which means he can have up to 20 memory blanks in one day. His father has organised fundraising events for the Action Duchenne charity, including swimming with sharks and a lantern release. Dominic, from Holsworthy, in North Devon, said: ‘He’s done some crazy things like dress up as BA Baracus and wear a silly mankini. 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 they supported the charity.’ The family are also backing a charity song on iTunes called Nobody Knows Their Time by Mark Emmins.
Αναρτήθηκε από Ioanna Alissandratou