Maria McNally’s Story

We caught up with Maria who shares with us her Volunteering story so far.

Could you tell us a little bit about yourself and what you do? 

My name is Maria. I am 20 years old, and I was born with Hypoplastic right heart syndrome which is a form of congenital heart disease. My full diagnosis is a double inlet left ventricle with transposition of the great arteries and coarctation of the aorta arch.

I was born in the Royal Victoria Hospital Belfast which was a planned delivery at 38 weeks as my parents had been informed of my diagnosis following my mum’s 24-weeks ante-natal scan. I have had three open heart surgeries to date: one at seven days old, one at ten months old and one at four years old. My first surgery was in Belfast and my parents were able to always be there due to the support of Children’s Heartbeat Trust and the accommodation which is available for parents of children in Clark Clinic. My second surgery which was an emergency rather than planned took place in Birmingham Childrens Hospital with the result that my third surgery also took place in Birmingham to complete the Fontan procedure. These heart surgeries transformed my life which means I can enjoy a much greater quality of life.

I studied hard for seven years at Loreto Grammar School Omagh, achieved excellent results and have just completed my second year of an Optometry degree at Ulster Univeristy at Coleraine, which I am thoroughly enjoying.

How long have you been volunteering with Children’s Heartbeat Trust, what do you do as a volunteer, and why did you decide to?

From early childhood, I have been involved with Children’s Heartbeat Trust attending a vast array of activities, from Family Fundays, Christmas Pantomime, Todds Leap and Escape Rooms to name but just a few.

When I turned sixteen years old, the Covid pandemic occurred which prompted me to get involved with volunteering with Childrens Heartbeat Trust. I decided to put my creative skills to use and created baking videos for children at home during lockdown which were posted on the CHT Facebook. Having got the taste for volunteering, I decided to build on this by helping out at Family Fun days which has led me to the point that I now find myself as Secretary on the Youth Council for Childrens Heartbeat Trust.

What has been the most memorable moment for you since getting involved with Children’s Heartbeat Trust?

The standout memory for me would be when I attended the annual ‘Summer Blast’, which was an overnight stay which was packed full of activity, fun and lots of laughter where special friendships were made and flourished. I can honestly say life-long friendships have been created.

Do you have any advice for other young people out there living with Congenital Heart Disease?

If I was to offer any advice to someone born with congenital heart disease, it would be to not let your heart condition define you. You are more than your condition so why try to fit in when you were born to stand out. I embrace the challenges of my condition, eat healthy, exercise and always ensure that I get a good night’s sleep. My mantra is that ‘I may have half a heart, but I do not believe in living half a life’.