Tizzy's mission is run by her loving family. Her story shows how the symptoms of mitochondrial disease can suddenly appear at any point, changing lives forever and bringing isolation and loneliness.
Mum Helen tells Tizzy’s story…
Tirion, known as Tizzy, had a normal childhood health wise, often enjoying long dog walks in the countryside and spending time with friends. She was a funny, lovable nightmare with absolutely no sign of any ill health or the terrible diagnosis to come.
Tizzy started having headaches over the summer of 2013, not long after her 18th birthday in May. We put it down to hormones, working and burning the candle at both ends. A few visits to the doctor concluded it might be migraines.
Not long after, she woke up unable see properly, and her head was incredibly painful. I had some big meetings in work that day, so I left her with the doctor’s phone number to get an emergency appointment. I didn’t think anything untoward at the time. She texted me to tell me she had an appointment, and her dad (Steve) was going to take her, so I just waited, expecting her to call me to say she’d been given stronger painkillers and maybe was going to be referred to see a specialist.
I don’t remember much about that journey home but when I got to the doctors, she’d had two more seizures and a paramedic was having to hold her down as she was refusing to have an IV put in – she didn’t like needles.
As she went into another seizure, the paramedic got the IV in and administered drugs to stop the seizure. In hospital, things seemed to calm, and the doctors were planning on discharging her. However, she started having seizures again, one after another – I lost count after 10.
As her seizures rapidly worsened, Tizzy spent four months in hospital where doctors considered and tested for many possible diagnoses such as cancer and ‘mad cow’ disease.
It was a variant called POLG1. Even once she was diagnosed, our confusion continued as we hadn’t even heard of it before. To then find out that there was no treatment or cure was heartbreaking. We found out that Steve and I were carriers, meaning we were unaffected ourselves but had passed it on to Tizzy.
From diagnosis, Tizzy had five years with some good spells where she could function relatively normally, but her seizures got worse and more frequent and needed controlling through very heavy medication.
Diagnosis didn’t hold Tirion back and she lived as much of her life as she could. She even learnt to ride a horse, holding on tight to the horse’s neck if she had a seizure.
In February 2018, Tizzy deteriorated. She couldn’t walk without help, and began hallucinating, suffering from a form of postictal psychosis, which often occurs after a cluster of seizures.
A month later, she was bed-bound in the Royal Gwent Hospital in Newport, repeatedly fighting off infections.
She just wanted palliative care as she didn’t want to live if she could do nothing for herself. Eventually, she got a chest infection and within a couple of weeks, she was gone.
Throughout Tizzy’s illness, we often felt so lonely and unsupported. I almost wished she had a more widely known illness like cancer, just so we could access the many charities and support groups. Our nearest specialist mito clinic was five hours’ drive away in Newcastle.
Tizzy told me that she felt she had “deleted her profile from life”, as many of her friends drifted away when she became ill.
Mitochondrial disease literally strips everything away. It is heartbreaking to watch. Young adults lose all their friends; they can’t go out and they can’t do anything for themselves.
Since losing Tizzy, I feel like I have a huge gaping hole in my heart. The house is so quiet, and often I will say something to her, forgetting she’s not there.
for those impacted by mito, so that nobody must go through the isolation and loneliness that Tizzy did.
Our very special, sassy girl is incredibly missed by us all, every single day.
Any support you could give
will be so appreciated.
Any funds raised by Tizzy’s mission goes to My Mito Mission’s
central funds to be granted towards research and support projects
to benefit everyone affected by mito.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to holding a bake sale, hosting a collecting can to giving out Tizzy’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Tizzy’s mission, choose a way that suits you below.
Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.
We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
We’d love your support with our fundraising… and we can provide supporting materials. Just ask!
Fundraise and shop!
Other ways you can support us
Visit our Support Us page for more inspiration!
