Help us help Tonia get the treatment she needs in the UK. Please sign and share our petition.

Tonia, Tonia's Mum, Nurse Sandra and Paramedic Tim
on the way home from Barcelona.

Please sign and share our petition here.

Tonia made it back to the UK a few weeks ago in dramatic fashion involving her ambulance breaking down and being written off, a trip to hospital in the South of France and heroic efforts from Tim the paramedic to get everyone home safely from the South of France. The good news is that they made it.

Tonia was making great progress post-operation and was regaining her vision and her strength, was able to sit up, and was working hard on her physiotherapy to regain mobility.

Unfortunately, back at home, things are not looking so good. The pain medication and nutrition needed was not administered by her local hospital. Trust between the patient and hospital has broken down (following years of to-ing and fro-ing over Tonia's complex case) and relations are now sadly at an all time low.

Without this medication and nutrition, Tonia's health has worsened once more leading to seizures, sepsis and pneumonia. As a last resort, Victoria, Tonia's Mum, took her to the John Radcliffe Hospital in Oxford in the hope of getting better treatment and to find a medical team willing to follow the care plan set out in Barcelona. These needs are now being partially met but Tonia is still very unwell and in hospital.

EDS is a complicated illness and there is a lack of knowledge about it in the NHS. Research into the illness is also underfunded and the EDS Society's resources are stretched. As a result, this means that some NHS Trusts don't have the resources, support or experience to deal with patients who have EDS and related chronic illnesses and people fall through the net.

But we are not losing hope. There are still things we can do...

We are still fundraising for a new ambulance and for more medical costs:

We are hoping and praying that Tonia recovers from her current bout of sepsis and pneumonia, and that when she's a bit stronger, can return to Barcelona for more treatment and potentially, another operation. There are also still bills to pay from her recent trip. You can donate here.

The Just4Children campaign doesn't cover Tonia's needs in the UK so we can't use those funds to convert a second-hand ambulance for her needs. As such, we have a separate campaign for that which you can donate to here.

We have an online petition going to request that the medical professionals looking after Tonia in the UK, follow the care plan from Barcelona and administer the medications and nutrition required. Please sign it and share as far and wide as you can. You can do that here.

How does Tonia's Mum, Victoria, celebrate her birthday...?

By setting up a raffle of donated artwork, of course, to go towards the funds for her daughter's return to the UK! The raffle started a couple of days ago on Victoria's birthday on the 17th of July and will run for 10 days and will be drawn on 27th July 2018 using a random number generator.

The raffle is running using a small lotteries licence purchased specifically for Tonia's Journey fundraising and is valid in the UK only. We've successfully used this method before.

Here's the link to the raffle page over at Justgiving. All monies will go direct to Just4Children on behalf of Tonia's Journey.

What are the six prizes?

The first item is by the wonderful British artist Hayley Reynolds and is part of her popular inspired Confetti Fields collection.

Confetti Fields, Hayley Reynolds

Next up are four gorgeous photographs of delightful scenes, all framed and mounted. I'm afraid our little internet snapshots don't really do them justice!

Photo of the sky is 'Crisp Spring day on the Moors above Settle, North Yorkshire' (photographer: Geoff Turner).

Crisp Spring Day on the Moors above Settle, North Yorkshire. Geoff Turner.

The water is 'River Greta below Latrigg, Cumbria' (photographer: Irene Beston).

River Greta below Latrigg, Cumbria. Irene Beston.

The trees and hill are 'Autumnal View across to Roseberry Topping, Cleveland' (photographer: Joe Cornish).

Autumnul View Across to Roseberry Topping, Cleveland. Joe Cornish.

The road through the trees is Bridge of Balgie, Glenlyon (photographer: Jason O'Flynn)

Bridge of Balgie, Glenlyon. Jason O'Flynn.

 The final piece of art is called "Traveller’s Joy" and is a beautiful oil painting of a Clematis (common name Traveller’s Joy). This has been donated by artist Victoria Edwards of Fugly Manor Art and is hand signed. It is mounted in a contemporary black frame.

Traveller's Joy. Victoria Edwards.

How do I buy a ticket?

This bit is straightforward. Each ticket is £2. Simply make a donation on this page. When you make your donation, please make sure you include your name and contact details and which picture/s you'd like your tickets against. Winners will be contacted and also announced via Twitter and Facebook.

Why is Victoria doing this?

Victoria's daughter, Tonia, has completed her first tranche of surgery in Barcelona and has started her rehabilitation. She now needs to get home to Eckington. Tim, the volunteer paramedic and Sandra, a volunteer nurse are flying out this week to Barcelona to prepare the ambulance for the road journey. The team will then drive back to Eckington. This raffle is to fund the costs of this leg of Tonia's Journey.

Please do buy a ticket. We still have a long way to go to cover Tonia's medical costs.

Many thanks and good luck!

Tonia is homeward bound very soon, but...

Today it is Tonia's Mum's Birthday and #TeamTonia are sending love and best wishes to her. However, the celebrations, if they are to happen at all, will have to wait. You see, later this week Tonia will be returning from Barcelona, driven in the ambulance that got her there, under the careful stewardship of three guardian angels: namely her mum Victoria and two volunteer paramedics, Tim and Sandra (pictured here with Tonia).

The journey out to Barcelona on the May Bank Holiday took a gruelling 34 hours. The paramedics, Tim and Sandra, flew back home whilst Tonia received her treatment from Dr Gilete and his team. Now they fly out again on the 18th and 19th in preparation for the return journey.

These good people use their skills and professions and service to benefit others. Yet, despite appeals to the airlines for free or discounted flights for our guardian angels, no airline has been forthcoming and so flights have had to be purchased. Additionally, for the journey - train fares, Channel Tunnel, toll fees and the cost of fuel needs to be met.

For this element alone £1,600 needs to be found. This adds to our outstanding fundraising bill of at least another £57,000 for further surgery, medication and rehabilitation costs not funded by the NHS. 

Where does this money come from? It comes from a combination of live events, raffles and online donations from kind donors like you.

Can you help us? Every single £1 counts.

TEXT giving is a great and easy route to supporting Tonia if you are in the UK: TEXT EHLE82£1 or EHLE82£5 or EHLE82£10 to 70070

Or you can donate online here via the Just4Children campaign on JustGiving.

Suffice to say, the urgent pressure on fundraising is immense. Thank you to everyone for your continued support, whether through contributions in cash, kind or through sharing or lobbying. Keep up the good work!