my son Alexander
and my daughter Oliviato London in order to recieve the medical treatment they need. My wife and Alexander are both diagnosed with Hypermobile Ehlers Danlos Syndrome. Olivia had been suspected of having the condition and recently attended a consultant who confirmed the diagnosis.
The Ehlers Danlos Syndromes are a conective tissue dissorder which causes the body to produce faulty collagen. Collagen is the glue that holds our bodies together. People with EDS are susceptible to joint subluxations/dislocations, suffer from chronic pain/fatigue and a lot of other issues which can severely affect their standard of living. Although it's recognised and slowly becoming more widely know here in Ireland, there are NO specialists or facilities in the country to help people with this condition. Members of the EDS community have been working very hard to change this to no avail, and recently learned that there are no future plans by our goverment or health services to implement any. There is no cure for EDS, but with careful management and specilised Physiotherapy the quality of living for someone with EDS can be improved. Evie is very prone to hip and wrist dislocations and has one on almost a weekly basis. She is extremely effected by changes to pressure and can be bed ridden with pain from something as small as a rain shower. 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. The consultants in the UK also suspect Evie has a serious neurological disorder called Chiari Malformation. She needs an upright MRI in London to confirm/rule out this condition.
Alexander was diagnosed at 4yrs old, he suffers from an unstable pelvis and has subluxations his ankle on ocassion. Because of EDS, he has very poor co-ordination and falls down the stairs and hurts himself in accidents regularly. Alexander also shows signs of Postural Orthostatic Tachycardia Syndrome.
Olivia at just 7 months old dislocated her elbow, she has been described by a doctor as "extremely hypermobile" and at 13 months dislocated her wrist. It is becoming clear to us that she is going to suffer more from the conditon than her brother who was over four years old before suffering his first dislocation.
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.
As I mentioned above there are no facilities and no specialists in Ireland to deal with this condition, but there are in other parts of the world. In London, there is a fantastic center that specialises in dealing with Hypermobility Syndromes. There, they will implement a physio regime that patients can bring home to their own physio therapists, learn pain managment techniques, and get help from leading specialists. With the help recieved at this center my family will learn how to manage this condition and hopefully get control of our lives back.
We recently attended St John's and St Elizabeth hospital in London to see Professors who specialise in EDS and Autonomic Dysfunction. These experts have confirmed the EDS diagnosis and wish for Evie to return for further tests as well as further visits to the physiotherapist to put a plan in place for her. Alexander and Olivia also need to return to the physiotherapist for an assessment.
Evie has been working tirelessly since learning of EDS to help the entire community, she has given all her time and talents to help get this condition recognised in Ireland, from writing many articles for newspapers, chasing politicians to bring up the matter in the Dail, appearing on numerous radio shows, leading support groups, spearheading campaigns all with the hope of helping her friends and family live better lives. She has given everything she has to help the cause. She is as best a mother that any child could ever hope for who will always to the absolute best for children no matter the cost.
Alexander is a fantastic kid with an insatiable thirst for knowledge and the desire to move and play and expierience as much as he can and Olivia is sweetest little girl ever, she never greets anyone with anything less than a smile, shes forever happy and brightens everyone's day shes around. Thats why it pains me to see these three fantasic 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 withraw from fatigue and the sweetest and the happiest little girl ever, to cry agony with dislocated joints.
I can do nothing but watch when their symptoms flare up, I'm left helpless to ease them. But I can do this.
So I ask you for your help, 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.
Autonomic tests: 2,738
Upright MRI: £1,700
Consult with Professor Grahame: £350
Consult with Professor Mathias: £350
Consult with Mast Cell specialist: £350
Consult with Neurologist: £350
Physio consultation: £180 x 4
Total 7,668 Euro.
Multiple flights and accomodation bookings will make up the remainder of the costs plus private consults here at home.
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