
My son got a cramp in his leg while playing laser tag at a birthday party... the cause has broken our hearts
Little Evan, who lives in Maidstone, Kent, was only told he had the debilitating condition on February 8 this year after going to a laser tag birthday party with friends.
Within 15 minutes his calf muscle went into a cramp rendering him unable to join in - but his mother Laura Winter said this time it was much worse than the leg cramps he had experienced up to then.
Ms Winter took her son to the GP and he was referred for a blood test leading the family to receive a call saying Evan needed to be taken urgently to A&E.
Following further tests a doctor told the family he believed Evan had a condition called Duchenne Muscular Dystrophy (DMD) - a severe inherited disease that typically begins at age four and progresses rapidly, causing muscle loss and resulting in difficulties standing up.
The family is now raising money through a GoFundMe page to try to offer young Evan a 'normal' life.
Speaking to MailOnline, Ms Winter said: 'Evan would sometimes say he hated walking and it was thought to be a result of his autism because he was on his tiptoes a lot.
'He holds himself really rigid and is quite tense which was seen as another symptom.'
Ms Winter explained the severe cramp at a birthday party occurred just days before Evan's seventh birthday.
Ms Winter was shocked to discover she had passed on the faulty DMD gene to her son as she was not aware of any family history involving the condition
She said herself and her husband held hands 'very tightly' when receiving news of the diagnosis and it was a 'very quiet drive home'.
Ms Winter added: 'Sometimes it feels like we're just living in a parallel universe and it will all just end soon.
'If our little boy had had a blood test following his first appointment with the community pediatrics team three and a half years ago we'd have known a lot earlier.'
The doting mother described her son as 'hilarious' and 'such a funny little boy'.
She added: 'He absolutely loves dinosaurs and the Jurassic world. He's so funny and sweet and loving - he's very well loved by everyone who meets him. Everyone he meets he just fills with dinosaur fact after dinosaur fact.'
Ms Winter was shocked to discover she had passed on the faulty DMD gene to her son as she was not aware of any family history involving the condition.
She said: 'Until recently, we were a "normal" family, living a simple but "normal" life with our two beautiful children, Amelie and Evan. We felt blessed beyond belief to have two happy and healthy children.'
The family are now trying to raise money to help Evan with his condition saying they are 'embarrassed' at having to turn to their friends, family and the public for help.
A GoFundMe page organised by Ms Winter reads: 'As Evan reaches his teenage years and early adulthood, he will become fully reliant on us for absolutely everything as the degeneration in his muscle accelerates.
'The caveat, we can't afford a home that can be made suitable, despite being a two working parent household, with local prices of properties that could be adapted marketing for between £500-600,000.
'We can't increase our working hours and miss precious time with our boy. We can't move to a cheaper area as we have our support networks, friends, children's school and medical teams locally. We are essentially stuck in a system that is broken and cannot offer any assistance.
'We can't save our beautiful little boy from this awful, horrendous disease but we will try with everything we have to give him a safe and comfortable home, where he can have the best childhood we can give him.'
Ms Winter told MailOnline Evan's symptoms had 'never been signifcant enough to put into Google' and she believed there should be more awareness around DMD.
'If parents feel like there's something not quite right - trust your gut, push harder,' she concluded.
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