A Dublin woman who suffers from Ehlers Danlos Syndrome (EDS) - or Hypermobility Syndrome (HMS) - is facing more surgeries in the US due to her condition.
Newstalk.com first reported on Megan Forkan, known as Mags, back in 2016.
She has since got assessed and travelled to Maryland for her treatment.
EDS is a genetic defect which affects the connective tissue of suffers due to faulty amounts of collagen.
Collagen is a protein, which acts as a glue in the body - adding strength and elasticity to tissue.
However there is no specialist consultant on the disease in Ireland. May is EDS Awareness Month.
The surgery Mags required was extremely complex, so she says she had no option but to go to the USA to a neurosurgeon who specialises in EDS patients.
Mags had her first surgery on April 18th.
She says while this was a success, it was discovered she also had a serious progressive neurological spinal disorder, Tethered Cord Syndrome.
She had to have a second unexpected neurosurgery on April the 22nd.
She says this had not been budgeted for, and only the start of the unexpected costs.
Speaking from the US, Mags says: "We got more bad news from new scans that show that my whole cervical spine is highly unstable right to my thoracic spine.
"We had thought the operation... was just a one level spinal fusion, but now it looks like I will need far more extensive surgery.
"We are discussing full options with the neurosurgeon as there are a few, but either way it will be way more costly than anticipated - even more than our extended target".
Mags with neurosurgeon Dr Frazer Henderson | Image supplied to Newstalk.com
She and her husband had planned to return to Ireland on May 15th, but now will need to stay an extra month.
"I need to get stronger from the previous two neurosurgeons, which were so close together, and I'm still in a lot of pain.
"It means we are now facing more medical costs with living here, accommodation and even medication.
"My mother and husband have both had to stay with me for three moths in total, so its impacting everyone."
"It is hoped this final operation will stabilise my neck and spine - and take the pressure off my cord to give me a full neurological recovery".
"It will be a much longer recovery than we would have hoped for and it will take a lot of dedication on my part - but if it gives me my independence back, this huge journey will be worth it."
"This was my worst fear, these new scan results, but so is the beast of EDS - I'm determined to give it my all.
"I am very grateful and overwhelmed by all the kindness I have been shown to date".
She has set up a GoFundMe page with renewed targets to help with her costs.
