The story of Noah
Noah’s story begins in April 2022, it had just been a normal day of school and play, followed by bedtime stories and cuddles with mom and dad. However in the middle of the night, he experienced a cardiac arrest. We immediately started CPR and called for emergency personnel. He needed to be shocked twice as his heart was in ventricular fibrillation, but once stabilized we were transported to the hospital. Once there, Noah recovered quickly but the doctors could not figure out what had happened. Limited genetic testing was performed but with no answers. He ended up having an implantable cardioverter defibrillator (ICD) placed surgically, and we were sent home. Life continued after that, albeit much cautiously. Then at 18 months old, Noah came down with a cold causing him to go into respiratory distress. He then had three additional cardiac arrests. His heart suffered major damage, and we had a long hospital stay while he recovered. After this, we insisted on more genetic testing. In June 2023, right after his second birthday we received a diagnosis – “PPA2; sudden cardiac death”. PPA2 is a mitochondrial disease that affects energy production in the cells. Viral infections and alcohol consumption are triggers that can lead to stress on the body, resulting in sudden cardiac death. It was incredibly scary having a condition that many of our doctors had never heard of before. We had to do a lot of research on our own and seek out the best medical teams to care for him. We were able to find a great support community online. At the time, there were only a handful of members living with PPA2, but today there are close to fifteen that we are in contact with. We share our stories, medical treatment plans, and support each other through the good and bad. Together, we are the Heart of PPA2 – an advocacy group working to educate, raise awareness, search for research and treatment options, and build a community where no one with PPA2 fights alone.