About Us

Who are we?

We are a team of volunteer fundraisers who have come together to support Tonia and her Mum, Victoria, in their quest for life-saving treatment for Tonia. This site is to update you with the background and latest developments of our fundraising efforts for Tonia's Journey.

Background and why we're doing this

Our friend Tonia (Antonia Payne-Cheney) from Eckington in Worcestershire, is suffering from a complex form of EDS (Ehlers Danlos Syndrome) with additional serious conditions. She first became ill 7 years ago and went from a fully active teenager enjoying sport, dancing and more, to bedridden and living in hospital for 3 years.

The TV programme, DIYSOS, came to the family's rescue and rebuilt the family home to include everything that they were using in a hospital ward. This meant that Tonia could come home and have a better quality of life.

During this time, Tonia used her spirit, tenacity and generosity to support other young people who were suffering life limiting illnesses. An amazing feat considering her own physical limitations and significant pain.

Sadly, Tonia's health deteriorated. There was no treatment left available to her in the UK having exhausted what the NHS can provide at this time. 

The good news is that there is a specialist, Dr Gilete, based at the Teknon Clinic in Barcelona. He specialises in EDS and related conditions and offers groundbreaking surgery and rehabilitation. It's only available privately so we have been fundraising to get Tonia to Barcelona. These things don't come cheap due to the number and length of operations and treatments required, and the complexity of Tonia's case. However, we know from other EDS sufferers who have undergone these procedures that the results are life-changing.

Even better news us that we raised enough money, more than £100,000, to get Tonia to Barcelona and to undergo the first stage of treatment. She has had the first set of operations and now needs more surgery and appropriate rehabilitation before she can head home to Worcestershire. Even when she returns, there will be need for care and support, but we'll cross that bridge when we come to it. 

What's next?

We now need to raise a further £60k so Tonia can complete the next phase of her treatment and recovery. We are so close to the finishing post. Can you help us get there?

We're raising the finance through the charity Just4Children over on Justgiving. Just4Children have supported Tonia and her family previously. All the funds raised through this campaign go towards paying the medical and associated expenses of Tonia's treatment.

You can find out more about the fundraising and donate by clicking here.

You can also help us by spreading the word on social media. You can follow Tonia's Journey on both Facebook, Instagram and Twitter.

You can also follow Tonia's Mum, Victoria. She's posting regular updates on her Facebook page about Tonia's treatment and recovery.

If you're in the UK, you can also donate via SMS.

TEXT EHLE82 £1 EHLE82 £5 or EHLE£10 to 70070

Thank you for your support!

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