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EXCLUSIVE Schoolboy, 8, diagnosed with terminal illness after GPs dismissed symptoms as dyspraxia for two years
A schoolboy's incurable disease was written off as dyspraxia by doctors for two years before he was diagnosed with a life-changing terminal condition.
Eddie Worman, then six, first caused concern after his mother Rachel, 39, noticed he was struggling to walk upstairs.
After two years of GP and physiotherapy appointments, Eddie's worried family finally received clarity and in April 2024 were told their son had Duchenne Muscular Dystrophy (DMD).
The debilitating neuromuscular disease leads to muscle wastage and weakness and Eddie is one of just 2,500 sufferers across the whole of the UK.
Now Eddie's family, including his sisters Maisie, 13, and Olive, 10, have launched a GoFundMe page to raise money for his ongoing care and to buy a specialised wheelchair before his condition worsens.
The mother-of three and her husband, carpet fitter Adrian, 46, first became concerned more than two years ago after noticing their little boy appeared to struggle with his mobility.
Rachel told MailOnline: 'I took him to the GP initially, because I was worried about the fact that he was really struggling with stairs. He was struggling with his mobility in terms of having to clutch hold of his legs and his thighs in order to climb the stairs.
'I just thought "that cannot be normal for a three to four-year-old should be tearing up and down the stairs". And obviously I had his two older sisters to compare him to.
'He wasn't complaining of pain per se, but it was general little things like, if he was sitting on the floor he wouldn't just jump up like a child would normally, he would clutch hold of his side, or he'd have to hold onto a piece of furniture.'
She added that it became even more noticeable when he went to school and she was regularly called in after he had been injured while playing.
'When he got to school I was getting called constantly that he was in and out of the medical bay, and he was sustaining head injuries where he wasn't able to duck out of the way when he'd have children of his own age hurtling towards him and playing games', she said.
Rachel explained she went to the GP and raised her concerns but explained the doctor did not seem particularly worried.
The mother-of-three persevered and her little boy was eventually seen by an occupational therapist.
After a three-hour assessment Rachel was given the news that Eddie had dyspraxia but that it would need to be confirmed by a paediatrician.
Dyspraxia is a common developmental co-ordination disorder (DCD) that affects movement and co-ordination according to the NHS.
In a follow-up appointment in March 2024, Rachel was told it wasn't dyspraxia but was instead DMD.
She nurse said she was left in complete shock and said: 'I never thought for one second it was anything muscular related because even me in a medical profession, I hadn't really heard of Duchenne.'
She explained that she went in to 'complete panic mode' and was angry at the length of time it had taken Eddie to be diagnosed.
She added that the terminal diagnosis 'devastated' their family and now they're focusing on how Eddie's life can be made comfortable.
Those with DMD have a significantly shorter life expectancy, with the average person only living to between 22 and 30 years of age and many dying of heart and lung failure.
She said: 'As a parent you can't bear the idea that there is anything physically wrong with your child, or that they're going to struggle in any way, shape or form throughout their life.'
Following his diagnosis, Eddie has been on a strict routine of medication, physio and hospital appointments.
The eight-year-old takes six doses of steroids a day and has 45 minutes of intense physio in the morning and another session in the evening as well as wearing leg braces each night.
Normal activities are difficult for the family-of-five and Rachel explained that they struggle to go out to the cinema and says she didn't realise what she took for granted before.
She said: 'It's grueling. Everything sort of happened and changed overnight.'
Rachel added that she finds it difficult to navigate the world with Eddie and said it has become 'glaringly obvious' to her the world is 'not designed for children with disabilities'.
She said the family can't even make a quick trip to Tesco because Eddie becomes too tired and needs to be carried through the supermarket.
Rachel also confessed she is worried about school and told MailOnline that while his friends make sure to include him in games where they can there are some things he can't do.
'At sports day they make sure he is still included but even playing hide and seek with friends, he just can't keep up,' she said.
Now Rachel and Adrien are crowdfunding to help them with the increased costs of looking after Eddie.
The worried mother told MailOnline that they're looking in to moving to a more accessible house because their current family home is simply not suitable for his needs.
Changes they need to make include converting a garage in to a downstairs wet room, adding a lift and even converting their loft.
Rachel said the couple are looking at a 'financially difficult future' and the nurse added she now 'lives to work' to make sure they can afford specialist equipment including a power assisted wheelchair for Eddie.
Eddie's parents explained that he is not eligible for one under the NHS and they can cost upwards of £1,000.
Rachel has also found support from other parents whose children are battling the condition and added that Facebook and Whatsapp communities have been invaluable.
She said: 'My biggest support was from those parents, because they understand they understand exactly what you're going through. I reached out to them as soon as Eddie was diagnosed because I was so lost.'
