Dan’s story as told by Dan’s dad, and Emmett’s Genies trustee, Dave.

In the last couple of weeks of his 2018 summer holiday, Daniel or Dan but never Danny, Chang started complaining of pain in his back. Things changed very rapidly over three days and ended with Dan waking up on a Friday morning not being able to control his lower body. At the local hospital, they suspected a neurological condition – Guillain-Barre Syndrome. It was only after an MRI scan was done that a tumour against his spinal cord was detected.Dan was rushed to John Radcliffe Hospital in Oxford on Saturday for emergency surgery to remove the tumour and relieve the pressure on his spinal cord. A week later, we were given the diagnosis of Burkitt’s Lymphoma. At this point, Dan had no lower body function and very minimal sensation.I have very many vivid memories of this time. I can smell the hospital corridor I was in when I had to call my ex-wife to tell her what had happened and that we were in the local hospital. I can see the worry on the face of my 16-year daughter locking the door as I drove off with Dan that Friday morning. I can taste that first hospital meal. Dan couldn’t finish it, so we shared it. 

All these snippets now seem disconnected from each other, jumbled up in time, space, and my imperfect memory. The one thing that threads them all together is my son’s smile, infectious humour, and good nature. This is the boy that thought it’d be a good idea to hold his breath and make the oxygen level trace on his monitor draw an interesting line while he was in an PICU bed. He had to come clean when the alarms went off and he had nurses around him.It wasn’t all smiles and good nature, though. 

Cancer sucks. As a father, learning that my 11 year son has cancer is something that I cannot really begin to describe. Interestingly, talk to Dan and he has a different view. Chemo is worse. Cancer may be a ride that you will never got off but, chemo is a hard bitch of a ride filled with pain and uncertainty. The side effects were terrible. He struggled with the pain, nausea as well as all the other side effects. While he was trying to cope with the chemo, he was also trying to regain his lower body function and relearn how to walk again. And I suppose he’s right.

 Cancer is a nebulous thing for him. 

The agony of chemo was real.

The fear that he’d never walk again was real. 

The mental struggle is real.

The isolation was real. 

The loneliness was very real. Not just in the sense of not being able to see his mates, but the loneliness of having relationships change because of what he’s gone through. That fear of being known as that “cancer kid” and treated differently because he was in a wheelchair.

Dan in his wheelchair with his crutches

Hearing your son say he thought death was preferable to going through another day of chemo is crushing. That is one of the moments that forced me into a shape that I will never bounce back from.

So, where are we now?

Dan is just starting his GCSE’s and is now two and a bit years into full remission. He had a tough 2019 learning how to walk again but he got there. In January this year, we had a scare when his legs started to feel funny again. After a horrible day of tests and waits, we got the news that it wasn’t a return of his cancer. His spine was weakened from the first operation and his spinal cord was being pinched again. Dan had a marathon 11-hour operation to free his cord and correct his spine with lots of metalwork. He had to relearn to walk again but thankfully, this time, he was back on his feet within a couple of weeks.He’s now a typical teenager and while he will never freely admit it, loving spending time with his sister and being normal with his mates at school again.

Why Emmett’s Genies?
As a trustee, I know why I decided to get involved but I’ve been rambling on for too long now. Dan says it better anyway.

“Emmett’s Genie’s sounds cool. It’s important to have a place where you can have fun. Somewhere where you can feel special without being treated differently. Because while you may have cancer and other things going on, you don’t want to be reminded of it all the time. You just want to have a good time and be treated like someone special because you are special rather than because you’re ill. And you’re going to put my name there somewhere? Awesome!”

Tim Haines
Ambassador & Advisor

After taking a degree in zoology, Tim Haines started his career as a medical journalist and went on to work in science programming at BBC Radio and TV. After producing shows for strands like Horizon and Tomorrow’s World, he created the VFX driven natural history series Walking with Dinosaurs which is rated as one of BBC’s top 20 shows of all time.

He then left the BBC and set up the production company Impossible Pictures and created both factual and drama series such as Prehistoric Park and Primeval. He wrote several books to accompany these shows and was awarded an honorary fellowship at Bangor University.  Recently he created an immersive experience called Dinosaurs in the Wild which toured the UK but has now opened in Riyadh.

Zoe Scullard
Founding Trustee

Zoe has been on the Trustee Board since the charity’s creation in January 2020. 

She has an extensive academic and practical background in the management of clinical placements and the support of student nurses with disabilities in practice.  

As well as being Emmett’s grandmother, Zoe has previously held positions as: 

  • Dean of Health Care (South), Health Education England 
  • Associate Dean Inter-Disciplinary Education, Health Education Thames Valley 
  • Principal Lecturer Practice Learning at Buckinghamshire New University  
Graham Pettit
Founding Trustee

Graham has been on the Trustee Board since the charity’s creation in January 2020. 

He is an experienced banking professional. A highly accomplished strategic, performance, and risk management consultant.

Graham has also served as Trustee, Director and Chair of a small national UK children’s disability charity.

David Chang
Founding Trustee

Dave was the first recruited trustee of Emmett’s Genies and has been on the Trustee Board since the charity’s creation in January 2020. He is the father of two children. Daniel, his son, was diagnosed with Burkitt’s Lymphoma and spinal cord compression trauma in 2018.

He is a Chartered Engineer with a background in English Literature and Creative Writing. He works as a project manager in the Engineering and Scientific Instrumentation industry. Dave is currently involved as an Associate Researcher in a UCL-led project in Paediatric Ambulatory Cancer Care.

Amy Scullard
Chair and Founding Trustee

Amy first had the idea for Emmett’s Genies in September 2019; she put her ideas into action and by January 2020 she had recruited four other fantastic trustees. On the 11th January 2020 they had their first official trustee meeting. 

Amy is the mother of the charity’s inspiration, Emmett, and therefore has lived experience of having had a child who is critically unwell and who also had a wish granted. Amy has two children, works in the NHS as a Neurological Physiotherapist, having qualified in 2009, and in her spare time, loves doing charity work, playing netball, travelling and spending time with her wonderful family.