“We need an Irish specialist who understands Ruby's condition”

Ruby Morrissey from Athlone is a lively, smiling girl who, like many children her age, loves to play with dolls, make-up and boardgames.

But the five-year-old faces daily challenges due to a rare condition called EDS, which renders her unable to sleep well or to attend school for more than a couple of days a week.
EDS, or Ehlers-Danlos Syndrome, is a complex group of disorders that weaken the connective tissues of the body. Ruby suffers in particular from hypermobility of the throat, which causes breathing problems while sleeping. 
Struggling to access appropriate care for Ruby in Ireland, her parents Elaine Morrissey and Ian Tyrrell make regular trips to a specialist clinic in London to avail of the expertise there. However, they are calling on the Minister for Health to appoint a qualified consultant for EDS in Ireland. 
Elaine first contacted outgoing Minister Simon Harris by email while in London last June, with Ruby supplying much of the wording: 
“My name is Ruby. I'm 4... Yesterday I had to come to England to see a doctor because there is none in Ireland,” read Ruby's message. 
“My mammy said the doctor will help me so I can colour my pictures or play when I want to and not need rests all the time. Why can't I just see a doctor where I live? There is lots of people like me. I don't like going on aeroplanes for blood tests because they make me sad and I can't go home.”
Elaine explains that Ruby has had health issues since birth: “When she was two days old she turned blue in the maternity ward. Since she was a newborn we knew there was something. She was diagnosed with autism at the age of three and we fought for three years for that diagnosis; because she was so happy and smiley it was hard for people to see through the smiles. 
“At three years old, she stopped walking and I could see she was in pain. We went to a physio in Galway, who was the first person to mention EDS to us.
“Last March, Crumlin agreed it could be EDS, but said they couldn't help. In May, Ruby got really ill and we thought we were losing her. We brought her to hospital where we were told she was lucky to be alive... and then we were sent home. Two days later we brought her in again as she was lethargic and couldn't move, but it was the same again. I can't fault the doctors or nurses, but they always tell us they can't help us. 
“Ruby gets very anxious in hospital, and we couldn't do it any more, so we rang London.”
Ruby has since made several trips to the Harley Street Clinic, whose details the family got from the EDS support group in Ireland.
While Ruby received an unofficial diagnosis of EDS in October, and was seen by an ENT specialist in December, the family say they are still struggling to get a referral in Ireland to someone with the correct expertise. 
“What we really need is a specialist in Ireland who understands EDS. We also need an upright MRI, as neck instability is not shown on a normal MRI,” says Elaine. 
“We thought once we had a diagnosis we would get help, but that wasn't the case. Most people in the EDS community believe it is not rare, it is just rarely diagnosed.”
Ruby currently attends school for as many days as she is able, but has trouble sleeping and suffers from severe fatigue. 
“She attended school yesterday for two hours but had to come home,” says Elaine. “She usually goes on Monday and Friday if she's able. She gets so frustrated as she wants to be with her friends. When she's not at school she is on the couch – if we play a boardgame I have to move the pieces for her.
“We have spent the best part of winter sleeping on the couch as it is easier for me to pull her up so she can breathe. Some nights she climbs into my arms and sleeps there, as she knows I can wake her by calling her name and she feels safer.”
Elaine is still awaiting a response from Minister Harris, and along with other members of the EDS community in Ireland, is looking for a long-term solution. 
“We have spent thousands on travel, accommodation, and consultation fees. It is exhausting for Ruby to travel, and she can’t move when we get home. But she never stops smiling. We have a great support system of friends, but we feel like we are hitting our heads against a brick wall.”

You can follow Ruby Morrissey’s story on Elaine’s Facebook blog @RubysEDSJourney.