Wednesday, 5 September 2018

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.