My sister proved doctors wrong for 32 years – I want everyone to know her story

I was determined to do something to celebrate Jody’s life and create the legacy she deserved. 

My sister proved doctors wrong for 32 years – I want everyone to know her story
Kyley and Jody taking a selfie together.
Jody had struggled since she had been born in 1998 (Picture: Kyley Dickinson)

I watched my younger sister, Jody, standing in front of the huge speakers by the stage at WOMAD, listening to the sound of the bass blaring out and dancing along.

Suddenly, I was overcome with emotion. ‘It’s like she’s free when she’s listening to the music,’ I said to my boyfriend, Nod, 25, blinking back tears.

Jody had been born with a rare condition called CHARGE and doctors had said she didn’t have a long life expectancy. CHARGE syndrome is a rare disorder that affects different areas of the body, and causes congenital anomalies such as heart defects, growth restriction and blocked throat passages.

It was 2010 and a moment I will never forget – when Jody’s love of live music was born.

I had no idea that just over 10 years later I would have lost Jody, or that I’d have launched a festival in her honour. 

But it hadn’t been easy getting my sister to WOMAD – a four day music and arts festival.

She had struggled since she had been born in 1998, with medical staff not confident about her survival prospects. 

Despite that, and being registered deaf and blind, my brave, wonderful and determined little sister had proved all the doctors wrong. After 10 weeks in hospital she had come home to me and our parents. 

Kyley and Jody when they were little, with their mother.
Despite being registered deaf and blind, my wonderful little sister proved all the doctors wrong (Picture: Kyley Dickinson)

I learnt Makaton – a language system that uses symbols and signs to communicate, rather than specific words – to talk to her. And even though she couldn’t speak, Jody had the most infectious personality, making friends wherever she went. 

As a teenager she developed scoliosis – which is common in children with CHARGE – meaning she needed a wheelchair. 

Jody had some hearing and loved listening to music, playing it loudly from her tape player, switching for an iPad as she got older, and dancing along in her chair. 

She loved her music loud and with bass!

Kyley kissing Jody on the side of her head.
Jody had the most infectious personality (Picture: Kyley Dickinson)

Her favourites were Chase & Status and Eminem, which she played on repeat. So when a charity called Festival Spirit had offered to take her to WOMAD music festival in 2010, Nod and I had been determined to make it happen.

Festival Spirit helps provide a live music experience to people who would not normally be able to attend, due to their disability.

Because of her scoliosis and lymphedema, Jody slept in an electric profile bed – an adjustable bed designed for medical use, that allows people to have control over their positioning. Jody needed the back to be raised and her leg slightly elevated as she slept. 

Kyley and Jody with their parents.
Jody had some hearing and loved listening to music (Picture: Kyley Dickinson)

She also needed oxygen overnight and even with the charity’s help, having oxygen delivered to site was a difficult experience.

But we had done it, and boy was it worth it! She loved every minute. 

The following year, in 2011, we fought hard, not only to get her to Glastonbury, but also across the huge site in the pouring rain to see Chase & Status live.

Again, she was in her element.

Kyley and Jody outside with Kyley's partner, Nod.
Jody loved her music loud and with bass! (Picture: Kyley Dickinson)

We were best friends and I loved sharing the joy with her. I moved back home with my boyfriend, to be closer to her. 

I tried not to think about the fact that I knew we would never grow old together, but on April 18 2021, our worst nightmares came true.

The evening before Mum took Jody upstairs for a bath and ready for bed as normal.

‘Good night flower,’ my partner Nod said.

‘Night Moo,’ I said, using another of her nicknames as I hugged her before Mum read a bedtime story.

Kyley and Jody taking a selfie wearing face jewels.
We were best friends and I loved sharing the joy with her (Picture: Kyley Dickinson)

I will never forget the knock on our door the next morning.

‘There’s an ambulance on the way for Jody,’ Mum said, fighting back tears.

Nod and I ran to see her before she was taken to hospital. By that afternoon Jody had passed away suddenly and unexpectedly from Asphyxiated Pneumonia, aged just 32.

We found out she was sick in the night, but because of her oxygen mask, she suffocated in her sleep.

When the doctor told us she was gone I screamed.

‘Why didn’t you save her?’ I sobbed.

Kyley, Jody and Kyley's partner, Nod, dancing at a festival.
When the doctor told us she was gone I screamed (Picture: Kyley Dickinson)

A short while later we were taken to see her.

I brushed Jody’s hair and cut a small lock to keep and got more blankets for her to snuggle under like we did at home. I held her hand and gave her so, so, so many cuddles.

Leaving her there that day was the hardest thing any of us have ever done.

Lockdown restrictions meant we could only arrange a small funeral, but I knew she deserved a bigger and better celebration. 

And so as restrictions were lifted, I was determined to do something to celebrate Jody’s life and create the legacy she deserved. 

Kyley, Jody and Kyley's partner, Nod, at a festival – blue sky in the background.
We want to change the way accessibility is covered in the events industry (Picture: Kyley Dickinson)

‘What about J-Fest,’ I suggested. ‘An accessible music festival for able bodied and people with additional needs.’ 

Mum, Dad and Nod agreed it was perfect. So I got to work finding a field, booking bands and organising equipment to make it wheelchair accessible.

I had never organised anything like this before, and the only way I got through it was knowing it was for my sister. It has been a demanding process – we face huge issues each year with funding – we are self funded and anything accessible is extremely expensive.

I booked food stalls with Jody’s favourites – cake and milky tea – and invited her family and friends.

Kyley and Jody taking a selfie in a car.
Jody brought us all so much happiness and joy (Picture: Kyley Dickinson)

In August 2021 J-Fest was held in a field near Wantage and attracted 500 people to celebrate Jody’s life. 

When Nod, a musician, played his memorial set we both sobbed our eyes out while thinking of her standing next to the speaker, dancing to the music.

We’ve organised two more festivals since and the fourth is set for the first weekend in August 2024.

We are proud to have fully accessible activities including aerial acrobatics, DJ workshops, climbing walls, street art workshops, sensory zones and more.

The festival doesn’t make a profit and the costs are insane, but it’s about allowing people to come together to celebrate Jody’s life and enjoy music no matter what their ability. 

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I’ve also set up an accessible glamping company, Accessibelle Glamping, for people who need these adaptations to camp with us at J-Fest, but also to go to other festivals too.

We want to change the way accessibility is covered in the events industry. This winter we’re fundraising for our own mobile accessible toilet so that we can take it to other venues.

Nothing will bring Jody back but she brought us all so much happiness and joy that the least I can do is keep her memory alive and help others.

My biggest sadness is that she isn’t there to enjoy it with us.

Support Kyley’s project to create a mobile accessible toilet & make events inclusive for all: https://www.crowdfunder.co.uk/p/j-fest-accessiloo

As told to Rachel Tompkins.

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