Julie Helen: 'Organ donation saved my brother's life'

This week is Organ Donor Awareness Week. Of all the awareness campaigns I know of, this one is closest to my heart because organ donation saved my brother Diarmuid’s life in 2022.

Prior to that, he had been in kidney failure for 17 years, much of that with a low level of function but not quite low enough for organ donation. There are many criteria to meet to get a kidney, and everything needs to fall into place. He went on the list just before covid hit, and then donations slowed significantly during the pandemic, so we had no idea when the call would come.

A couple of weeks before the call came, Diarmuid was really unwell and spent a stint in CUH. He spent his birthday in there and, as a man with Down Syndrome, his birthday celebrations have always been super-important to him.

I remember Mum sent a video of his hospital room full to the brim with doctors, nurses, care assistants, porters and security staff, many of whom had known Diarmuid for years, so they brought balloons and cards and sang happy birthday to him.

Diarmuid was beaming with delight and it was a testament to how all who cross his path immediately love him because he is friendly to everyone and extremely patient during all the poking and prodding that’s needed during hospital stays.

Hand on heart, I remember seeing the footage and wondered if all those professionals were worried my brother was gravely ill. Thankfully, though, Diarmuid came home again a few days later.

One morning, I awoke and I could hear serious commotion upstairs just before 7am and my heart sank, thinking Mum and Dad were making the decision to take Diarmuid back tothe  hospital. Dad knocked on my door and just said the fateful words, “We are going to Dublin.” This could only mean one thing: the day we had all been waiting for, there was a kidney matched with Diarmuid. Within ten minutes, they were gone.

Alone in the house, I stared at a computer screen, supposedly working for most of the day, waiting for updates of Garda escorts, reaching the hospital, meeting the doctors, the battery of tests and finally surgery at 6pm.

My head was torn between hope and fear for my brother and the heartbroken family of the donor. Actually, for someone I know nothing about, I think about Diarmuid’s donor so often, and I’m so grateful to them for making the decision to donate their organs. I am also so grateful that they made their wishes known to their family.

You can do the same, and the Irish Kidney Association urges that we ‘Leave No Doubt’ in terms of organ donation. Tell your family of your wishes so that the decision is an easy one if the worst happens to you.

According to the Irish Kidney Association, in 2024, 263 organ transplants took place in Ireland. 175 of those were kidneys. Thirty of them were living donors giving their kidney as a choice for a loved one, and the rest were deceased donors, the most common and heart-wrenching path.

There are 600 people in Ireland waiting for organs, 500 of those are waiting for kidneys, and though we are born with two, my brother lives a full life with one working kidney, and I will be forever grateful for our life-changing gift in seeing him thriving.