Antonia Payne-Cheney is trying to raise £200,000 by April for a lifesaving operation in Barcelona. Myself and several others are doing out bit to try help her plight. Personally, myself and Dan Jepson from DJ Productions have sent a balloon in to space with Antonia’s photograph on to help try and raise awareness.
You can donate by visiting Antonia’s Just Giving Page, or text “EHLE 82” and your amount (£1, £5, £10) to 70070.
Even just a small amount will help her cause.
The following information was provided by Victoria Cheney, Antonia’s Mother.
Antonia is 20 years old and has Elhers-Danlos Syndrome which is a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. Antonia’s case is one of the most severe, and her brain stem is being crushed due to the condition. If left untreated, it could lead to paralysis and death.
For years Antonia’s complex illness has baffled UK Doctors who have simply been trying to manage her condition. Recently the family have received news from Specialist Neuro & Spinal Surgeon Dr Gilete in Barcelona that Antonia is one of the most advanced cases he has been asked to evaluate. She requires lifesaving surgery and immediately needs to raise £200,000 by April which is when her operation has been booked.
Cornwall based Mrs Savage helps run a group of over 400 UK sufferers with the same condition which seems to predominantly effect women.
Mrs Savage 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. It can also restrict or block the flow of spinal fluid which is supposed to cushion and support the brain and spinal cord, this can lead to other symptoms and complications. At the stage Tonia’s has progressed to, as she is extremely unstable, as well as causing her horrific symptoms and pain, any slight accident can have fatal consequences. Antonia has repeated seizures and respiratory arrests as well as gastric failure and POTS (postural orthostatic tachycardia). Her case is at an advanced stage of the condition and without urgent surgery this will not be a happy ending. Until recently it has been an extremely difficult condition to diagnose, as due to gravity, it is only really evident when patients are scanned in an upright position by an Upright Mri scan. It is also essential with this condition that areas of instability within the skeletal system are always investigated with a motion X-Ray (especially the cervical spine) to look for instabilities which are not always evident on a motionless image.”
Dr Gilete, who is Antonia’s specialist Neuro & Spinal Surgeon, has operated successfully on many patients with the same condition who have gone on to regain a good quality of life post surgery. He has been shocked by Antonia’s case and s peaking from the Teknon Hospital in Barcelona 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.” Dr Vicenc Gilete M.D – Neuro and Spine Surgeon. Hospital Teknon, Barcelona.
Dr Gilete’s clinic in Barcelona is the only one of its kind in Europe that deals with such ‘complex cases’.
Victoria Cheney, Antonia’s mother, has to frequently resuscitate her daughter and help her when she has seizures as well as being a full time nurse and Carer to Antonia. Victoria has struggled to keep her alive and gave up her career as a teacher to fight for a diagnosis. It has finally happened after 6 years and many nights sleeping on hospital floors never leaving her daughters side.
Victoria is on a carers allowance and £40 per week income support. She has got into severe debt as a result of trying her best to keep her daughter alive and as a result cannot get these funds.
She recently told us: “I feel like I have been fire fighting for 6 years, now I have a firm diagnosis I am now fighting for time and my daughters life. I must raise the funds or Antonia will miss her slot for surgery at the beginning of April.
I wish there was someone who could just step in and help as I am currently up all night trying to raise money whilst looking after my daughter alone”. Victoria is pleading for help so she can focus on keeping Antonia as stable as possible whilst concentrating on organising the journey to Spain, for the essential surgery, which will need to be by air ambulance as she cannot travel by any other method.