Athlone mother’s urgent medical appeal is 'life or death'

An Athlone mother has issued a heartbreaking plea to the HSE and Taoiseach Micheál Martin to make her Christmas promise come true and get her urgent medical treatment as she is “slowly dying” and “fading away” in her bed.

Elaine Morrissey (37) says if she does not get a TPN (Total parenteral nutrition) or some sort of feeding system she will die soon. She is severely malnourished and weak and is unable to keep any food down, and only a small amount of liquids.

The Athlone woman and her daughter Ruby (7) both suffer from the rare, painful and life threatening condition Ehlers-Danlos syndrome (EDS), a complex group of disorders that weaken the connective tissues of the body and has no cure. She also has gastroparesis and chiari malformation along with other conditions.

In a letter to the Taoiseach recently the Athlone mother says poignantly: “I'm slowly dying, fading away in bed like so many, in bed a skeleton covered in skin. My bladder, bowels and stomach don't work but my local hospital can't give me my tube. They 'don't have the resources to help' someone like me”.

Describing the worsening of her condition in recent months, in her own words Elaine explains: “I've lost my ability to see more then blur, I've lost my ability to speak, I've lost my ability to feel my legs, any touch, my arms don't have the strength to hold me up and dislocate so I can no longer crawl. I can't eat or drink.

Her spokesperson Leanne Hill, who also has EDS, earlier this year launched a major fundraising appeal 'Saving Elaine' to enable her to have spinal fusion surgery in Spain, a procedure costing over €80,000 which could massively improve her quality of life. Sadly, since then Elaine's “condition has deteriorated massively” and her situation is so serious now that the surgery isn't an option at present. She has lost over three stone in recent months.

She, and others working on Elaine's behalf, are now fighting to get her a TPN, which Leanne says is now a “life or death issue”.

So far they have told it is “too complex and too risky” and the health authorities don't have the resources.

Initially, Leanne says doctors were looking at a nasal gastric tube but that requires going under anaesthetic, something they feel is too risky given the instability in her neck and her other conditions. A TPN does not require anaesthetic, according to her spokesperson.

She is begging the HSE to give Elaine the treatment, saying she is scared for Elaine's life and for her family. Over 1,300 people have signed an online petition entitled 'Feeding tube for Elaine to save her life' on the change.org website.

“She is dying at this point – our priority is to get her a TPN. Ultimately, it is our hope to get the spinal surgery but right now that's not realistic. She needs a TPN and weeks and months of nutrition before she'd be able to get the surgery,” explains Leanne, who says she is very grateful to their many supporters and campaigners which seen them already raise over €23,000.

“She won't be alive long enough (to get the surgery) unless she gets the nutrition. You can't live on nothing,” ends Leanne poignantly.

You can find the petition #SaveElaine on the change.org website or search Saving Elaine to access the GoFundMe page.