A Family is in an urgent race to raise £200,000 for vital lifesaving surgery as 20 year old’s brain stem is being crushed due to rare genetic condition.
Left untreated it could lead to paralysis and death, Antonia’s only option is to have urgent surgery this April in Spain.
Carley Savage helps run a group of over 400 UK sufferers with the same condition as Antonia Payne-Cheney which seems to predominantly effect women.
Carley, who herself has the condition, has said: “A group member found Tonia online a few weeks ago and alerted us. Since then we have been rallying together, with her mother Victoria, to get her a firm diagnosis. It has now been confirmed and is far worse than we all expected.
Tonia suffers from ‘hEDS’ the ‘Hyper-Mobile Type of Ehlers Danlos Syndrome’ which affects collagen throughout the body including ligaments and joints. It is basically what is holding us together and it has been suggested that 1 in 15 sufferers go onto develop ‘Cranial Cervical Syndrome’ where the ligaments become so lax that the vertebrae become extremely unstable and can create subluxations and dislocations up inside the head and down the spine.
When this happens, it puts pressure on the brainstem and spinal cord which affects the signalling from the brain to the rest of the body and secondary conditions develop. Her case is at an advanced stage of the condition and without urgent surgery this will not be a happy ending.
She requires urgent lifesaving surgery in Barcelona and immediately needs to raise £200,000 by April which is when her operation has been booked. She literally can’t wait any longer”
Specialist Neuro & Spine Surgeon Vicenc Gilete has said: “Antonia´s case is one of most advanced and concerning that I have evaluated. Surgery is the only option to interrupt the progression of her symptoms and offer the possibility of an improvement to her quality of life.”
Leading Choreographer & Creative Director Arlene Phillips CBE, who has known Antonia for some time, wanted to reach out and show her support for Antonia’s fundraiser. She has kindly made a statement:
“The first time I met Tonia was when she had just been given an electronic bed by Caudwell Children to enable her to get out and about, and as I walked up the red carpet for their annual Butterfly Ball she waved and caught my eye. We had a conversation about her life’s dream to be a dancer and choreographer, but due to sepsis and having spent 3 years in Hospital, her chances of achieving that were dashed.
We’ve kept in touch ever since and I became a patron of her charity, which she is now too weak to continue with. Tonia is such a wonderful, brilliant young woman. I fell in love with her passion for life, for helping others, and we shared our love for theatre, choreography and dance.
The combination of severe illnesses that Tonia is now suffering has reached a catastrophic point, she is in excruciating pain and sometimes has to be resuscitated numerous times a day. Without this surgery, there is not going to be a happy ending for Tonia and her devoted mother Victoria.
Tonia has never mentioned death before now, she’s always been so full of hope, but now her life is on the line. This surgery is her final chance for survival, and she is only 20 years old. We have less than 4 weeks to raise these funds for the specialist surgery not currently available in the UK that will save her life.
Over the years, despite all of her own medical needs, Tonia has raised money for so many other children in need and now she herself needs the same. I implore the public to donate anything they can, however small, so that this target can be reached and Tonia can have a chance of not only surviving but to really live her life and to help others live theirs”.
Antonia wanted to personally say thank you for all of the help, support & donations so far: https://www.youtube.com/watch?v=L_lU0r0CYh0
Please help by donating on Antonia’s just giving fundraising page: https://www.justgiving.com/campaigns/charity/just4children/toniasjourneyforsurvival