Jon Dunn

I have been thinking about telling my story online for some time now but never really found a place or platform where I felt inclined to share… until now that is- Tsu is such a great site with a sense of community and positive vibes that I feel comfortable doing so. I want to tell the story of the last 10 years of my life, not because it’s a tale of relentless bad luck and huge emotional and physical trauma but because it’s a tale of what an individual can overcome when surrounded by love, supportive people and a sheer determination to survive. Also, the last thing I want from writing all this is sympathy. I feel inclined to share this because I hope it can in some way help other people with their struggles but perhaps also that by sharing this I am taking the last step of putting it all behind me…


Dylan was born on 19th June 2004. He was not only the first child of my then wife and I, but first grandchild on both sides. He had loving and doting parents, grandparents and aunties.

As far as we were aware he was a healthy child. He passed all of his new born checks and the first six months of his life he seemed perfectly normal. He was a happy, contented baby who made his mum and dad proud.

After 6 months we started to become concerned- he wasn’t developing at the same rate as his friends and he had become acutely constipated. We spent the next six months making regular trips to the doctors, explaining that we thought something wasn’t right with Dylan and that we were concerned. Eventually, when Dylan was just over a year old we finally came into contact with a doctor who shared our concerns and admitted Dylan to hospital for check ups.

After a 3 day stay in hospital and many different blood tests, scans and discussions a doctor entered the room to tell us the biggest and most devastating blow that every parent fears…


We were told Dylan had an incredibly rare lipid storage disease called Sandhoff’s disease. This disease meant that he was missing an enzyme in his blood that has the job of breaking down a fat those deposits on the brain. As a result, this build up would slowly shut down parts of his brain and we can expect him to become blind, paralyzed and epileptic amongst many other symptoms before eventually causing death. We were told there is no cure and not to expect Dylan to live past 3 years old.

The following 10 months were hell. Knowing that your child is going to become so ill and will die soon is probably the most traumatic thing anyone could go through. It’s utterly draining physically and emotionally. I cried every night, every morning, through the day. For the first 24 hours I couldn’t even walk. I was physically sick with shock. I had to crawl on my hands and knees. I tried to stay strong for Dylan, strong for the rest of my family who’s pain and worry would have been multiplied many times if they knew exactly how the experience was killing me on the inside. We tried to fit as much into Dylan’s short life as possible. While all I wanted to do was sit in the corner of a room and cry, I wanted Dylan to have a happy and fun packed life as possible… I had to put the most painful and distressing emotional burden I have ever felt to one side to make Dylan’s life as great as possible.

On top of the pressure of Dylan slowly dying, we also found out that Jane was pregnant. Thankfully tests showed the new baby was clear of the hereditary disease. While we watched one child die we watched another child form during pregnancy and Hali was born January 12th 2006.

Although Dylan did show symptoms we were told to expect, I felt his suffering was kept to a minimum with thanks to an amazing NHS team as well as incredible rest bite and support from a local children’s hospital- Children’s Hospice South West (little bridge house)


Dylan died in my arms on April 30th 2006 at 22 months old. It was the worst day of my life. The second worst day of my life was burying him 14 days later. We had a long time to plan his funeral so took some comfort in that we made it exactly how we wanted but there is no escaping the fact that burying your children is the most unnatural and hardest thing anyone could do. We went through this trauma while caring for Hali who was just 3 months old at the time.


When Dylan had gone I was totally exhausted. Jane and I had put so much into caring for Dylan while trying to bring Hali into the world ans given him so much love that we had no energy left for each other. We grieved differently. We had grown apart, our relationship had suffered and we separated in early 2007.


Just after the separation I was diagnosed with testicular cancer. The stress and sadness of loosing the most precious gift I had ever received in such a distressing and traumatic way had left me with a life threatening illness. Luckily I caught the cancer extremely early and after a swift orchidectomy to remove the culprit testicle I began a 2 month course of chemotherapy.

Chemo started with a two week aggressive course of treatment in hospital. Although it was tough, tiring and relentless, I felt no worse than before the chemo. I was dead on the inside, my physical pain was no match for my per-existing emotional pain. I was an empty she’ll going through the motions of this treatment. Although my family were incredibly supportive throughout the entire 2 months of treatment I was lonely- I became insular, inward and brushed off any offers of help. I felt like I had lost two children… Dylan plus Hali (who was now one year old and lived with her mother).

I got through the chemo and the doctors reported it was very successful. Was I at a point where I could start to look forward and build my life?


Soon after Dylan died I took out a loan offered to me by my bank. At that point in time I was somehow holding down a job while going through chemo. I was incredibly low cared little for risk and had no regard for my future so I thought why the fuck not?! I set up a business and tried to launch a couple of other event based business ventures which due to my state of mind at the time were largely unsuccessful. On top of the loan I rinsed out a credit card and overdraft to the sum of £25k. In 2008 the pressure started from debtors to start paying things back. I avoided answering phone calls, got letters daily and was told by many advice organizations to declare myself bankrupt. I refused because I felt the right thing to do would be pay the money back- Something which I am still doing to this day.

I began to drink…everyday. People say they drink to escape what’s happening to them… I was doing the opposite- I was drinking to feel the pain. I hadn’t grieved properly for my loss of Dylan, for the loss of Hali, for having cancer… alcohol made me feel the pain. I had always had a relationship with alcohol bur right now I was a full blown alcoholic… It was the lowest point in my life. Luckily I was able to pull myself out of this hole after 8 months.


At the start of 2009 I started to get pain in my left hip. It was sporadic but increasing in intensity and frequency as time went by. By August 2009 I had been diagnosed with A vascular Necrosis of both hips. I learned that this was a known side effect of the specific chemotherapy drug I was given. Necrosis of the hips is when the blood supply to your femoral joint stops and the bone cannot survive and this isolated part of the bone dies. It becomes weak, breaks away, causes the hip joint to be rough and grind rather than be smooth and fluid and therefore becomes very painful to move. Every day activities I took for granted became difficult and painful- walking, running, dancing, the stuff you do in the bedroom! I was told at the age of 29 that I would definitely need one but maybe 2 hip replacements in the next few years.

The pain got worse into 2010 and I spent some time trying to protect my less effected right hip with crutches and a period in a wheelchair. I underwent an operation called “Core Decompression” which did relieve some pain temporarily.

2011 – Present

I spent my time living with the constant pain and discomfort of my right hip. Not able to be as active as I would like, I can’t do anything high impact- running, jumping even walking for any distance. The Necrosis in my left hip thankfully stopped so although I probably won’t need a hip replacement there, I should expect severe arthritis in later life.


At the end of September 2013 I had just put myself on the waiting list to get my hip replaced. I had also been seen by my local doctor and hospital because I had become aware of missed heart beats. My Dad had discovered and had been operated on in 2012 for an aneurysm to his aortic root so I was being checked out too. I got a phone call from the cardiologist consultant at the hospital- Dad’s condition was hereditary, I too had a aneurysm in my aortic root which was a threat to my life and I required major heart surgery within 6 months.

Earlier this year I went under the knife to repair the aneurysm. It was a major operation where they stopped my heart, broke open my sternum and replaced my aorta with a prosthetic version. The surgery took close to 6 hours. The best way I can describe the whole experience is like a very controlled car crash. The recovery is long and painful…. but i recovered.


So why am i telling this very personal story? Despite the relentless bad luck I have suffered I still feel lucky. I still keep pushing myself and I still keep positive. For the last five years I have been supported by the most amazing person i know- my amazing wife Sarah. We met in 2009 and she has helped me through the daily pain I suffer from with necrosis, the heart surgery and recovery, but probably most important of all- my mental well being. She has taught me to grieve, to express my feelings and to live again. She has stuck with me through my anger, sadness and suffering. She has offered endless patience and unconditional love. Not only that, we have built and amazing little family and have two amazing little men- Solomon (2 years old) and Simeon (1 year old). We also get to see the wonderful Hali on the weekends and spend some fantastic time together as a family of 5 whom mean absolutely everything to me. We are building a new life together and looking into the future.

Not all my business ventures were failures! In 2010 I set up a digital marketing agency which I managed for 3 and a half years, grew into a team of 6 and sold in October 2013,

I have an incredibly supportive family whom I love dearly. My Dad in particular has been amazing over the years and has bailed me out more than once!

My life is great. I am thankful for what I have and thankful for what I have lost. I remain positive no matter what life throws at me and I keep pushing forward. I am surrounded by positive people who love me and support me and I (try) to do the same back- and THAT is what is important. Don’t let your past sculpt your future, always go forward and appreciate the beauty and love around you. If I can do that with all that I have been through then surely you can do the same too?

That’s my story. Have you got one too?

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