I’m having life-saving surgery in Barcelona because I couldn’t get it in Ireland 

A heart-breaking letter from an Irish mother who had to travel to Barcelona for life-saving surgery because of a rare and painful condition which has left her bed-ridden and in distress, has underlined the kindness of Irish people in supporting those in dire need. 

Elaine Morrissey suffers from a life-threatening and incurable condition called Ehlers Danlos Syndrome (EDS), as does her daughter Ruby.

The Athlone woman’s genetic condition weakens the body’s connective tissues, such as tendons and ligaments that hold parts of the body together, and she is now unable to keep any food or liquids down.

Hope was offered by treatment in Barcelona, and a huge fund-raising effort is underway to make sure Elaine can get the help she needs. Her family and friends have appealed for a last push for funds to ensure that the surgery and aftercare are covered,

She says

Hi, I am writing from Barcelona, and today, I go for life saving surgery. The surgery isn’t available and there is no consultant in Ireland, with only a handful world wide who can perform this surgery.

Two in Barcelona and, as far as I know, the rest are in America. It’s been a long struggle to get here. I have a wonderful medical team, and I could see the frustration and apologetic looks over the years as they tried to find someone to help or see me but there was no consultant. My rare conditions, I was told, are too complicated. I lived the last three years in bed, in excruciating pain. I get violent spams and dislocations even lying still and flat in bed.

Then there’s temporary paralysis, pressure in the head, permanent vocal cord and throat muscle damage – and I am tube-fed as I can’t take anything by mouth even water. My hair and teeth reflect my extreme weight loss. Due to my body’s reactions and allergies they still haven’t  found anything I could take that helped the pain. I missed everything in my children’s lives for the last few years, in my family’s life: birthday, graduation, tournaments, shows. I do not even know what my daughter’s school is looks like.  Despite it all. I’m very lucky my family and friends literally keep me alive. They were trained in areas of my care – even by daughter age 8 can give water and flush my tube. Not only that but they have done so much to try raise money to help me get to here to have life saving surgery.

My daughter Ruby age 8 set up her own business selling her own homemade art projects. She is autistic and she also she has the same conditions as me. She sells her crafts from Facebook and shop in Ireland which is closed till we return.

She also wrote a song asking people to “help save Elaine”, and she created T-shirts for the walks and bags to sell.

My son age 22 and his friend walked from Athlone to Dublin. They slept in a tent one night before handing a letter into the Dail.

Jordan then met  a TD and Councillor up in the Dáil the following week. We are looking for awareness and change when so many, especially in the medical world,  do not understand this disease – a thief that steals so much from you.

Ian and his family and friends climbed Croagh Patrick to raise funds and awareness. Our local community and friends came together and held events and fundraisers for us. I will have full fusion from C0-T2 tomorrow and a band T2~T3. I will lose full motion but this will also decompress my spinal cord and hopefully regain some or all organ function and stop the neurological pain and wrong signals sent around my body.

I will almost certainly need throat surgery because scans show  when my neck is upright the throat muscles close my throat.

To avail of this essential surery, I needed to travel to Barcelona at huge financial cost and suffering tremendous pain. The road to recovery will be long and I’m told intensive physio due to the damage to my dorsal but all worth it because we are hoping this will give me back some independence and not rely on 24/7 care from family and friends and the ability to be upright and leave the house.

My aim and dream is to attend my daughter Ruby’s communion. I also can’t wait to feel fresh air and rain. Ruby can’t attend a full week of school due to this condition. She suffers enormously but you won’t see her without a smile or finding ways around the obstacles to do what she wants. Due to my deteriorating health we came over suddenly with short notice and given a last minute appointment. We are very lucky and the team is amazing.

You are assessed in every area to make sure you can get through this surgery but this also means we still have vital funds to raise. Any help is so gratefully received. Thank you so much to everyone in Ireland who have carried us through this difficulty thus far.

 

  • Social Media https://www.facebook.com/RubysEDSJourney
  • Gofundme https://www.gofundme.com/f/9zaf8a-saving-elaine
  • Linktree https://linktr.ee/RubysEDSJourney
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