Susan Spence’s Story

Heart Mum Susan shares her volunteering story with us.

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

My name is Susan. I am a mum to twin girls, both of whom were born with two different types of Congenital Heart Disease. I work part time around them as a Pilates Instructor, Sports Massage Therapist and Systematic Kinesiologist.

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

I started volunteering with the Children’s Heartbeat Trust in 2016, a year after the girls were born. I have participated in two relay marathons and ran one full marathon to raise funds for this charity that has benefited my family and so many other families in Northern Ireland both emotionally and financially.

I love the buzz around fundraising. The support that family, friends and even total strangers display is such a comfort during uncertain times wrapping the whole community in a warm enveloping hug.

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

My most memorable moment was finishing London Virtual Marathon in my home town in September 2021 five days before my six year old daughter’s third heart surgery (second open heart surgery). Many athletes from my running club ran in relays with me so I was never alone throughout the 26.2 miles. A finish line was erected on the beach and over £7000 was raised.

How does being a volunteer for CHT make you feel?

The awareness of a community coming together for vital fundraising for children with CHD and their families is a feeling that cannot be surpassed.