'Nanathon' festival to raise funds for Nan’s life-changing surgery

The friends of a woman with a rare disease have organised a day-long festival to raise money for her life-changing surgery.

Sat, 25 Oct, 2014 - 01:00

Kelly O'Brien

Titled ‘Nanathon’, the extravaganza goes towards spinal surgery for Nan McSweeney-Bailey from Ballincollig, Co Cork who suffers from Ehlers-Danlos Syndrome (EDS).

EDS is an inherited connective tissue disorder affected one in every 5,000 people and is caused by a defect in how the body produces collagen.

Since collagen is important for the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs, the disease can be extremely debilitating.

Treatment includes close monitoring of the digestive and cardiovascular systems, occupational and physical therapy and corrective surgery.

Having suffered from a range of medical problems throughout her life, including a misdiagnosis of bipolar disorder, Nan was finally diagnosed with EDS last year.

Her many symptoms include muscle spasms, cataracts, early osteoporosis, facial nerve pains, nosebleeds and migraines.

Nan underwent a complete hysterectomy two years ago and has been in a neck brace since February.

As a designer, artist and pianist, the declining use of her hands has been devastating, and now the prospect of losing her ability to walk is more than Nan can bear.

This month, she travelled to the US for three spinal surgeries. Two have been successful, and a third is scheduled for October 30.

While the majority of the surgery costs are covered, almost €50,000 is needed to make up the difference.

Eoghan Gallagher, General Manager of the Camden Palace Hotel and one of the organisers of ‘Nanathon’, said: “Nan is a hugely positive person but she’s has a really rough time in life.

“EHS isn’t recognised by the HSE which is part of the reason she has to go to the US for surgery. Nan has done a lot for us so we’re going to do as much as we can to help.”

‘Nanathon’ takes place today from 4pm at the Camden Palace Hotel, Cork and features theatre, music and a pop up charity shop.