The story of Jace Carney
My name is Jace Carney and I was born in the middle of the covid pandemic lockdown on 28th April 2020 in Manchester, UK. From the day I entered this world I was the happiest, smiliest, most content little boy and I thrived month by month as I reached my milestones. I loved to swing high in my swing in my back garden, eat milkyway chocolate and watch my favourite character Iggle piggle in show in the night garden. As I got to around 10 months old my mummy started to realise something wasn’t quite right as I was struggling to sit up, crawl and eat. After a few weeks of tests and hospital visits, and 2 weeks after my 1st birthday I was sadly diagnosed with a rare genetic disorder name Krabbe disease. Most of the children diagnosed with this disease unfortunately do not reach the age of 2. Most children lose the ability to eat, move, communicate, and some lose their sight and have seizures, along with many other life changing problems. My mummy and daddy and all my family and friends were so heartbroken, how could this be happening to us when i was born so healthy and had never had any problems? but me being Jace, I continued to battle on through everyday with my famous smile. No one knew how I did it or where I got my strength from but I did and I battled hard and bravely for 10 months. Unfortunately on the 4th January 2022 I lost my battle. I had fought so hard I was tired of fighting anymore. I want to help raise awareness for Krabbe disease in honour of all the children who have lost their battle and the ones who also continue to battle everyday. We are all heroes 💙