Joy's Story
Joy was just three-years-old in 2018 when she was diagnosed with restrictive cardiomyopathy - a type of heart disorder in which the walls of the heart become stiff, preventing it from filling with blood normally. Her mum Chipo shares her emotional journey in CHI at Crumlin
"Growing up, Joy was always the life of the baby groups. She was always very independent and had amazing determination. In October 2018, Joy got very sick with Pneumonia and was admitted to hospital for the second time in her life. This is when she received her diagnosis of restrictive cardiomyopathy. As well as pulmonary hypertension - a condition in which high blood pressure affects arteries of the lungs.” In December 2018, whilst visiting family, Joy got very sick and was admitted to the intensive care (ICU) in CHI at Crumlin under Professor Orla Franklin. This is where Joy and myself then stayed for five months. Orla was very professional, she was honest with us about Joy’s outlook and our options whilst also being caring. There was just so much to take in. After months in ICU, Joy made some improvements and was moved to the Children’s Heart Centre in Crumlin.
It was an extremely scary time for our family, we were told Joy was incredibly sick and needed a heart transplant in order to live. Joy’s Dad, Mark looked after our two other children – Cara and Matthew - whilst Joy was in hospital, trying to ensure some normality for them. This meant that Joy and I spent most of our time in Crumlin alone, spending every moment of every day in hospital anxiously waiting for a heart to become available for Joy. Our Clinical Nurse Specialist – Helene Murchan became like family to us. She was absolutely amazing, taking great care of not only Joy but me as well. She knew exactly how sick Joy was and how serious it was for her. She was so caring and compassionate and rallied a team that included hospital school teachers, psychologist, play therapists and hospital volunteers to help. Helene made Cara and Matthew feel special too. She’s a real angel! Joy spent a lot of time with the wonderful Play Therapy team who were incredible. They would always find activities for Joy to do, to ensure she could continue being a child. Even when she was at her worst and she struggled with her fine motor skills they always found a way for her to play! icre
I was so focused on Joy that I couldn’t even tell you what season it was outside. Staff would make conversation with me about the weather, and I wouldn’t have even noticed the sun was shining. The nursing staff were so kind, and really went the extra mile. Not only keeping Joy alive and giving her amazing care, but also looking after me. One day they came to me with a voucher for a massage and told me to take some time for myself and they would mind Joy. I hadn’t realised until then just how much I needed that small break, it really helped me to refocus! The whole team always went above and beyond in their care for our family. Whilst we were in Crumlin awaiting a heart for Joy, when she was feeling up to it, they would regularly arrange for us to take Joy out for a few hours to spend some much- needed time with her siblings, which gave our family some normality. These trips out took so much organisation and coordination from multiple teams across the hospital to ensure Joy was safe and that we had everything we may need. But even with all the coordination and logistics, it was never too much trouble, and they were always so willing to accommodate, we will always be grateful for that time together. In October 2019 we were told that Joy was the back up for a heart that had become available in the UK. So, we travelled to Newcastle with hopes of a transplant, however we didn’t get the heart that time, so we returned to Crumlin. It was heart- breaking, travelling all that way whilst Joy was so seriously-ill, only to return with our little girl in the same condition. Joy began to deteriorate and so we decided to think about bringing her home to be with her family. But it was then that we got the second call from Newcastle – this time Joy got her new heart and had her much-needed transplant.
We stayed in the UK for six weeks after the transplant and returned to Crumlin in January 2020. In February 2020, we were given the go ahead to be discharged and Joy was finally able to come home. Which was a real mix of emotions – Crumlin felt like home to us! However, we were so excited be able to spend time together again as a family. Joy still attends Crumlin regularly; the illness had a real impact on her lungs, which have suffered badly. Joy is prone to lung infections, so we regularly meet with the respiratory team as well as her consultant to review medication and her progress. However in all, Joy is now doing really well. There was a time we never knew if we’d get to this stage, but we are so very grateful for the care and expertise that have got us to where we are today. Joy is a real social butterfly, and she definitely does not let her illness limit her. She absolutely loves school - it was what she looked forward to most during her time in hospital. She also loves swimming and dancing and has a real eye for fashion! - Chipo, Joy's Mum
Trick or Treat
Help support kids like Joy!
2022 means that our Ghoulish Trick or Treat campaign will be 22 years old this year and will once again be proudly supported by MiWadi. Imagine, all those years, our wonderful supporters have been donating to help sick children by doing something they love – dressing up and having a party.
Why not join in the Ghoulish fun and host a Halloween party in your crèche or school, your home or community or you can even have one in your office and raise funds for the sick children in CHI hospitals and urgent care centres at Crumlin, Temple Street, Tallaght and Connolly. Whatever way you do it, you can have some monstrous merriment that will change the lives of children like Joy.
