It wasn’t until I was looking through my 18-year-old daughter Tirion’s texts, that I realised she’d been hiding the severity of her illness from me.
‘I need you to do my makeup, because I can’t see properly,’ she had messaged a friend. Two weeks later, she was admitted to hospital and diagnosed with mitochondrial disease – a genetic disorder that most people know nothing about.
The condition is currently at the heart of one of the most tragic storylines on Coronation Street, where Leanne and Steve’s young son Oliver is diagnosed with the disease after having seizures.
It’s a story I know all too well myself.
In the summer of 2013, Tirion had started complaining of bad headaches and feeling sick. At the time, she was working full time in an insurance call centre, never took a day off, and was still hanging out with her friends and socialising, so I assumed it was a bug or that maybe she simply wasn’t drinking enough water.
When we did take her to the doctor, they concluded that it might be migraines.
But on 23 September, that same year, Tirion had a seizure – the first of many to come, and the start of any parent’s worst nightmare. Two months later, she was diagnosed with the illness that would eventually kill her.
I can’t describe what it’s like to have a doctor tell you that they don’t know how long your child has left to live. I was devastated – I still am – and I also blamed myself for not noticing that she was sick.
Even now, I wonder if things would have gone differently if we’d spotted it sooner, but the reality is that mitochondrial disease is such an unusual condition that even if we had, there is no cure.
As the weeks went on, Tirion grew weaker. She struggled to do anything on her own, and lost mobility of her left side, which is a massive thing for an 18-year-old to deal with. She also couldn’t walk at all until April 2014, and then walked with a crutch until the following year. She needed a wheelchair all through the time she was ill, due to tiredness, had trouble concentrating and had an inflammation in her brain that was making the seizures worse.
This is a particularly dangerous symptom of mitochondrial disease; there have been cases with teenagers where doctors can’t get this under control, and the children pass away within six months.
Throughout my daughter’s illness, I struggled to deal with her diagnosis, but as her mum I had to put all of that to one side and make sure my main priority was that Tirion stayed as positive as she could.
Sometimes, I didn’t know what to say when she was upset or down. I knew she wasn’t going to get better, and Tirion knew it too, so I went on autopilot.
My daughter died on 9 April, 2018. This was four years after Tirion was first diagnosed. She was just 22.
In the weeks leading up to her death, a palliative care team had got involved to discuss what we wanted to do and she told them that she didn’t want to live like this anymore. Tirion was pretty much bed-bound at this stage, and needed help with being washed and going to the toilet. She’d had enough.
I was very proud that she was able to say that and it was almost a relief to hear it, because I had an inkling already.
Tirion was the most funny, stroppy, loveable and brave young woman you could ever imagine. She had such a way about her; she could wrap anyone around her finger, it didn’t matter how blunt or sassy she was. I’m sure she wanted to be a celebrity and, in a way, she became one.
During her illness, we got involved with the Lily Foundation – the UK charity dedicated to fighting mitochondrial disease. We decided to attend the charity’s ball in 2017, the year before Tirion died, and that event is one of my fondest memories.
I remember when Tirion called me from a dress shop, after spending days looking at cheap outfits on Amazon with no luck. She sent me a photo of herself in this gorgeous blue dress – and told me it cost £400.
As a mother does, I asked if she’d gone mad. But she wore it to the ball nonetheless, and that picture has become iconic within the Lily Foundation, and to me. Tirion was buried in it.
Grief is strange. It’s a very difficult emotion to explain to people.
Even two years on, I think about her every day, and sometimes, when the sadness and the thought that I’m never going to see my daughter again hits, it’s almost like it’s not real.
Silly things upset you; I was at work once and met someone who asked how many children I have, and to avoid having the conversation, I said one – referring to my son and Tirion’s younger brother, Dylan.
I went into the toilets and cried instantly afterwards. It felt like I had betrayed Tirion. But people treat you differently when you tell them, you can see the look in their eyes.
Our family will always have a missing piece, but that’s something we have to live with. It has definitely brought me and my husband closer together; we were going through a bad patch a year or so before Tirion got ill and he was brilliant at looking after her and helping me stay positive.
Terrifyingly, Dylan started complaining of headaches soon after Tirion’s diagnosis, but he has been tested and doesn’t have the mitochondrial gene. I feel so lucky that he doesn’t have it.
We need to raise awareness of mitochondrial disease and encourage people to help raise money towards research.
It’s too late for Tirion. But hopefully, by sharing her story, as painful as it is to tell, we can save another child’s life.
*As told to Almara Abgarian.
For more information about mitochondrial disease, visit the Lily Foundation website or call 0300 400 1234 if someone you know has this condition and you need help or support. You can also email the charity at [email protected]
What is mitochondrial disease?
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body (except red blood cells).
Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support organ function. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole organ systems begin to fail.
The parts of the body, such as the heart, brain, muscles and lungs, requiring the greatest amounts of energy are the most affected.
Symptoms vary depending on the organ(s) affected but may include seizures, atypical cerebral palsy, autistic features, developmental problems, fainting and temperature instability.
According to The Lily Foundation, the prognosis depends upon the severity of the disease and other criteria. As more research funds are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives with mitochondrial disease.
In other cases, children may not be able to see, hear, talk or walk. Affected children may not survive beyond their teenage years. Adult onset can result in drastic changes from an active lifestyle to a debilitating ilness is a short amount of time.
Treatment plans vary from patient to patient but involve therapies, diet changes and other means to try and slow the progress of the disease.
You can find out more information from the NHS here.
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