‘Fear of the future outweighed the fear of Covid’

Photo: Elaine and Ruby Morrissey.

You will rarely see Ruby Morrissey (5) without her smile, a sparkly dress, heels, or her lipstick.

But behind her sunshine exterior lies major medical challenges for the young Athlone girl, which her family now accept will not be treated in Ireland despite their best efforts.

A recently set-up GoFundme page has already raised €4,231 for the youngster who went to Harley Street in London recently in a bid to find answers and to improve her quality of life.

She has a rare condition called hypermobility EDS or Ehlers-Danlos Syndrome, a complex group of disorders that weaken the connective tissues of the body.

Ruby suffers particularly from hypermobility of the throat, which causes breathing problems while sleeping, but she also has trouble walking and needs a wheelchair, suffers from constant pain, chronic fatigue, a loss of eyesight, and absent seizures.

Every door was closed to Ruby in Ireland in terms of medical care because doctors said they couldn't help her or she had too many issues, according to her mother Elaine. There is no consultant who can treat EDS in Ireland either.

In desperation last year, she even sent a heart-rending message in Ruby's own words to the then Minister for Health, Simon Harris looking for medical care for her child; she also stopped the then Taoiseach Leo Varadkar on a visit to Athlone to plead for help on behalf of her young daughter, but all to no avail.

Now, Elaine accepts there is no medical help for Ruby in her home country, and she will have to travel to England in the future to get care for her daughter.

“The fear of the future outweighed the fear of Covid. She badly needed healthcare and I felt I had no choice,” were her heartbreaking words to the Westmeath Independent as she spoke movingly on Monday of being forced to travel to England last week to access medical treatment that her daughter cannot get at home.

With Ruby's health deteriorating, Elaine says she was wracked with guilt and mixed feelings about going to the specialist clinic in London on July 22 after cocooning since early March.

Despite being “terrified” and barely leaving the hotel room while they were over there, Elaine says she felt she had no choice for Ruby's sake after putting off the trip earlier in the year.

What Ruby's family fear is that she has the vascular form of the condition which is much more serious, life-threatening, and life-shortening and it is this form that she was tested for. Most people with this type of EDS have a life expectancy of just 48.

“People think Ruby's story is rare but it's the same story for the majority of EDS people in Ireland. They have to travel,” Elaine points out, saying that the blood tests she had recently cost €1,750, but were denied to her in Ireland despite four appeals because medics told they didn't believe it was necessary for her to find out if she has that form of EDS or that it would make any difference to her life.However, Elaine, who herself only found out she too had EDS in December, (although not as severe as Ruby) believes differently and wants her child to have a chance to do the simple things in life.

“I just want her to grow up, sleep, eat, and play. She has never been able to eat a full meal despite the fact she loves going to restaurants and baking. She takes meal supplements (because of her throat) and that has brought her weight up a little,” Elaine, who documents her daughter's story on Ruby's Journey on Facebook, explains.

Ruby also wants to get back to school and misses her friends a lot, although her condition means she can only manage two days a week at best.

What has kept the family going though is the public support on the GoFundMe page and the messages of encouragement, which Elaine gets emotional just talking about.

“Thank you so much from me and Ruby to all who donated and shared the posts. The support we constantly receive is so heartwarming. I'm so grateful to everybody. I could never have dreamed of the support we received, it's amazing,” she says in tribute.

Asked how her daughter is since they got back on Saturday, Elaine replies: “This trip has taken a lot more out of her than the last two. I don't know if that it's because we were in the hotel room all of the time (between appointments). She also really missed her dad Ian Tyrrell and brother Jordan. She cried on the way to the hospital. She is not a child who cries except at bloods. It was hard for her to understand why no one could come with us”.

In four to five weeks Elaine and Ruby will be back in London to get results, some physio, and hopefully some other referrals for other specialists. To simply be told Ruby is lucky to be alive is “disheartening” and “scary” and Elaine hopes in the future the care will be there for people with EDS in Ireland. She wants to raise awareness of the conditions with doctors and have the tests like an upright MRI made available here.

For now, they are just hoping and praying that the tests bring some news of Ruby's condition but no matter what she stays smiling.

“She's my little hero. She faces every challenge with a smile. I'm biased, I know, but she's brilliant,” her mother ended.

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