A YOUNG Irish family are appealing for help to fund treatments in London which will help them fight a battle consuming their lives.
Mum Evie Nevin (30), her son Alexander (7) and daughter Olivia (2) suffer with the rare and debilitating Hypermobile Ehlers Danlos Syndrome (EDS).
EDS is a connective tissue disorder which causes the body to produce faulty collagen – the naturally-produced ‘glue’ which holds our bodies together.
Mum Evie is occasionally left bed-ridden due to the pain.Sufferers of EDS are susceptible to joint dislocations and endure chronic pain and fatigue.
EDS affects the entire body and severely impacts the quality of life of those who have it.
Although the condition has become better recognised in Ireland in recent years, there are still no specialists or facilities in the country to help treat EDS sufferers.
Evie, a journalist from Clonakilty, Co. Cork, is prone to hip and wrist dislocations on almost a weekly basis.
The mother-of-two often finds herself bed ridden due to debilitating pain brought on by things as small as rain showers.
Husband Martin, 29, has watched his wife and two children fight bravely against the symptoms of EDS without the hope of receiving treatment in their own country.
“These conditions have taken over our lives, it seems to be getting worse with every passing week, we fear for our children having to live like this all their lives,” Martin said.
“Small tasks such as cooking a meal can be so strenuous on her body that she has on more than one occasion passed out. Her hips can become so bad that she is often forced to use a wheelchair for mobility.
“She also suffers from Orthostatic Intolerance and Vasovagal Syncope and UK experts believe she suffers from Postural Orthostatic Tachycardia Syndrome (POTS), a type of Dysautonomia which is the cause of her dizzy and fainting episodes.”
One thing the couple say could make a huge difference to the life of their family is medicinal cannabis.
Those with EDS are often resistant to pain medications and can find it difficult to manage their pain.
Medical Cannabis is recommended for EDS patients in the US along with Ketamine, but only the former is available in Ireland.
Martin, a videographer and carer, added: “Alexander is a fantastic kid with an insatiable thirst for knowledge and the desire to move and play and experience as much as he can.
“Olivia is the sweetest little girl ever, she never greets anyone with anything less than a smile, she’s forever happy and brightens everyone's day she’s around.
“That’s why it pains me to see these three fantastic people suffer, to watch a woman with so much talent restricted from sharing it with the world, a boy with the will to climb a mountain withdraw from fatigue and the sweetest, happiest little girl ever, to cry agony with dislocated joints.”
Eminent London-based Rheumatologist, Rodney Grahame has previously stated that no other disease in the history of modern medicine has been neglected in such a way as Ehlers Danlos Syndrome.
Alexander (7) and Olivia (2) also suffer from EDS. Pictures: Waxwing PhotographyAs there are no specialists or facilities in the country to help treat EDS sufferers, the family have had to look across the Irish Sea.
The family recently attended the Hospital of St John and St Elizabeth in London to see professors specialising in the treatment of EDS and Autonomic Dysfunction.
They are hoping to raise £10,000 for further tests, physiotherapy appointments, accommodation, flights and living expenses to make their dream of receiving treatment in the British capital a reality.
EDS has no known cure, but with careful management and specialised physiotherapy the quality of living for someone with the condition can be greatly improved.
Mum Evie said: “I went from getting up at 6.30am and getting home at 9pm working as a journalist in 2012 to being someone just existing in 2013. Sadly, my story isn't unique.
“I remember being very self-conscious all the time because I rarely had the energy to get dressed and people only really saw me in my pyjamas. I got called lazy a lot. That hurt. I didn't know what was wrong with me but I knew it wasn't laziness.
“When Alex and Olivia were diagnosed my heart broke. I felt so guilty. My genes did this to them but, thankfully, I've moved past that now because what's the point in feeling guilty?
Evie added: “My heart goes out to Martin. He didn't ask for this at all. When we first met I was still relatively ‘normal’.”
The family say that members of the EDS community have worked tirelessly to convince the Irish Government to fund EDS treatments.
They add that they were recently told there are no future plans by the Government or health services to implement any.
An emotional Martin added: “I ask you as a father and I ask you as a husband to help me send my family to get the treatment they need. Anything you can spare, even a few euro will make a massive difference for us. With your help we can make it happen.”
