UHG scholarships tribute to tragic diabetes sisters

Scholarships are to be set up by University Hospital Galway staff in memory of two Galway City sisters who left a lasting impression on all who met them during their long stints in the Diabetes Centre before they both succumbed to a cruel illness eleven years apart.

With just 13 months between them, Tanya and Hazel Tarpey from Letteragh, Rahoon, seemed perfectly healthy little girls. The eldest in the family, Tanya was nearly three when she was diagnosed with APECED (autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy). Her sister was tested a year later following a fall off a tricycle.

The condition is a rare genetic autoimmune disease affecting mainly the endocrine glands. The most common features are parathyroid gland failure, affecting calcium metabolism, chronic susceptibility to candida yeast infection and Addison’s disease or adrenal insufficiency.

During their early years the pair had to regularly attend hospital in Galway and Dublin for blood and calcium monitoring and take medication such as steroids, but it was only when they hit their mid-teens that the condition took a turn for the worse, explains their mam Mary.

“They had very low calcium levels, energy levels. They’d have muscular spasms where the muscles would lock which was very painful. Hazel had been to the UK to be assessed for a transplant but it didn’t work out. Every time you’d solve one thing you’d hit another brick wall, yet another obstacle.”

Tanya was just 21 when she died on September 6, 2003, an unimaginable blow for her parents Mary and Tim, sister Ruth and brother Dermot. But it must have been truly horrific for Hazel, knowing she could share the same fate.

“She always had a smile on her face regardless of what was going on in her head knowing what happened to her sister. She’d worry about other people all the time. She was so kind. She had a wonderful outlook, she was a wonderful girl. They both were.”

While Tanya had never spent more than a fortnight in hospital at a time, Hazel tried some new generation therapies, some of which worked for a while and gave her relief. But gradually her hospital admissions became longer and in the last five years her condition deteriorated severely.

“She would have been a very independent person, she had her own car, she used to drive to matches, she would never go on holidays to Spain or France, but she might manage an overnight stay in Dublin but would link up with St Vincent’s Hospital just in case.

“She did a childminding course as she loved small kids and did work for a little while but her illness got in the way.”

Eventually Hazel had to be on a daily drip and take steroids continuously for pain relief. She went into hospital on January 2 last year and never returned home. She died on October 29.

Mary insists that she would have been happy to be in University Hospital Galway, among people she loved so dearly.

“She idolised the staff in the hospital, and they idolised her. Both of the girls did,” she recalls.

“[Consultant Endocrinologist] Prof [Tim] O’Brien said to us for the interns coming along in August, they’re going to be at such a loss. Every single one of them was sent to Hazel. She was able to do her own bloods, calculate blood doses, measure her meds. She was so in tune with her treatment. If they were in doubt, they’d come back and check with her.”

It’s been a difficult road for the entire family, with midnight trips to the emergency department if one of them suddenly took poorly. Mary recalls travelling to the UK for treatment with Hazel when Ruth was about to begin her Leaving Cert.

“To be honest so many people ask me how I coped. Hand on heart I don’t know. You do what you have to do don’t you? I never thought about trying to get support. I’d meet my husband at the door, one of us was always coming and going from the hospital to be with her. You just got on with things,” she says.

“The team at the hospital was just fantastic for both of them. From the nursing staff, the kitchen staff, porters, cleaners. She was like part of them because she would have spent so much time there.”

Some staff treated both sisters. They have decided to create two scholarships in their names, which will support a medical student and a nursing student at NUI Galway.

“They are remembered with such fondness by other patients as well as staff at the Diabetes Centre who got to know them so well over the years. The sisters left a deep and lasting impression, particularly because of their extraordinary courage,” said a spokesperson for the centre.

■ To raise funds for the bursaries, donations can be made to Diabetes Care West. Contact Garrett Hurley, Diabetes Unit 091 542148 on Ext 2720 or email garrett.hurley@hse.ie