I am running the Ealing half Marathon, for Eddie

I am running the Ealing half Marathon for My friends son Eddie who was diagnosed with Duchenne Muscular Dystrophy (DMD) in April 2024. Here is his story so far.

Eddie had just turned 7 years old, when they received this devastating and completely unexpected diagnosis. They had spent 2.5 years battling with numerous medical professionals from varying specialities to get answers as to why Eddie was struggling with his mobility as much as he was. They were referred from one professional to another, 2.5 years and 6 assessments later, met with the Paediatrician (had waited over 18 months to see) to confirm a diagnosis of what they were told was suspected dyspraxia. She raised concerns for Eddie from a neuromuscular perspective – this was the first time this was ever mentioned and came as a prolific shock. If by them telling the story raises awareness and prevents even one other family going through what they have endured this last year, and what they are now faced with then it will not be in vain. This condition is extremely rare. Unfortunately, you are only made aware of this community when you become part of this club you never asked to join. Despite this awful place they find ourselves in, the support from family and friends has been incredible.

This charming, funny, courageous, little boy was told that he had a life limiting condition - one where his muscles will gradually fail him. Cruelly, his muscles will degenerate to such an extent his heart and his lungs will struggle to function; he will be reliant on a wheelchair before he’s a teenager, with his condition slowly but surely diminishing his quality of life and his ability to perform even the simplest of tasks. Eventually and inevitably requiring the need for round the clock care and eventually taking our boy too soon.

DMD is a rare genetic condition caused by a mutation in the gene that produces dystrophin. Dystrophin is a protein that is essential for all muscles to function (including the heart and lungs). DMD affects 1 in 3500 boys born per year in the UK. There are approximately 2500 fellow sufferers currently known in the UK. DMD is a severe muscle wasting condition that currently has no cure with a current life expectancy of around 30 years of age.

This diagnosis completely devasted them as a family. To be told their beautiful little boy is facing a future of countless hospital appointments, gruelling physio twice a day, daily steroids, pain, suffering and ultimately a terminal diagnosis - is utterly unimaginable. That day was the end of ‘normal’ as they once knew it. A very different version of ‘normal’ took its place. One with time limits and constraints. How many birthdays/Xmas/holidays would be blessed with? How many more will he enjoy being able to mobilise and enjoy to the fullest? Everything is their lives changed that day. Total panic mode set in. They became acutely aware of planning for the future and having everything in place ready for when the time came that Eddie was no longer able to make the stairs, when his legs get too tired to carry him and they are physically unable to scoop him up and relieve his pain and discomfort.

Eddie has been on high dose steroids since his diagnosis to try and help to keep his muscles stronger for longer and to protect his heart and lungs (this alone comes with so many frightening side effects and complications), he endures intensive physio twice a day, and wears leg splints each night to slow the progression of contractures in his achilles to keep him ambulant for longer. Even with the new additions to his daily routine, he takes everything in his stride and just gets on with everything this awful condition continues to throw at him. Despite the many challenges he faces he inspires us every day with his resilience and immense courage. He really is a special little boy.

Now 8-years-old Eddie has a vibrant personality, with the sweetest soul and heart of a lion. He lights up any room he enters and is adored by all that has the pleasure of meeting him. He loves nothing more than spending time with his adoring family, and a sound circle of friends, drawing for hours, playing with Lego or with his VR pals, or relaxing on his iPad.

Normal everyday conversations with Eddie suddenly become so poignant and so upsetting – recently the children were asked to dress up as their future profession in school - Eddie chose to be a Dr ‘because he wants to help other children like him’. Eddie talking about being old with grandchildren, wanting to go to the gym when he is older – your child simply speaking of a certain future suddenly stop us in our tracks and punches us hard in the gut and brings us hurtling back to the harsh reality that it DMD. Irrespective of this - they must carry on for Eddie and the girls. They deserve the very best life has to offer, full of adventures and lots of happy memories without dwelling too much on whatever the future may hold.

The day Eddie was given his first manual wheelchair in November 2024 was a heart-breaking day for them as parents - it was the start of things to come. Watching your baby get excited to be pushing themselves in a wheelchair because ‘he gets to rest his legs’ is just gut wrenching. Our plastered-on smiles masked our utter devastation. They know that day will come in the not too distant future where Eddie will choose to take refuge in his wheelchair in favour of tired legs which are no longer able to carry him. Eddie of course took this milestone in his stride and absolutely loved his new set of wheels – he teaches them daily that we need to be more courageous, and more willing to face any and all adversities with his same strength and fortitude. We simply need to be more Eddie!

They know their future is now full of many difficulties, in the next 2/3 years they will need to move from our home as the OT has deemed it unsuitable for Eddie’s future needs. They will need a house which can facilitate a bedroom and wet room downstairs and to allow Eddie to move around freely in his wheelchair. As grateful as they are to have the wonderful NHS (Eddies mother is a nurse and is very familiar with the services available) but as a parent you become acutely aware of what isn’t available or funded – powerchairs, specialist chairs for school to support his posture, everything becomes an uphill struggle with a broken system and a postcode lottery battling against you. The paperwork involved in fighting to ensure you get your child gets the help they need becomes a full-time job in itself. It’s truly exhausting.

They have created this page to raise funds where possible to support Eddie in any way possible, to make memories for him and the girls before life becomes too challenging, for a power assisted chair (which he currently does not qualify for under the NHS), for any and all things necessary to make life as easy and as carefree as possible for him and the girls. It’s a parent’s worst nightmare to imagine a life without their child in it, to watch your friends child slowly decline. We want to make a really tough life better for Eddie and the girls. Please help in any way you can.

Any and all help will be so appreciated, it will go a long way to helping us make really happy memories with Eddie and the girls and hopefully providing a brighter future. I know times are incredibly tough for everyone, they are so very grateful for any and all support and for being a part of this journey with us.

Thank you so much for your help, love and continued support.

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