Our 9-year-old son Daniel is the funniest lad you'll ever meet. So caring, kind and boisterous. He is beyond clever. He loves music and rocking out on a daily basis. He also loves swimming, the outdoors and his family. He takes care of his mum -- emotionally, so much.
He struggled with signs and symptoms for 5 years before a diagnosis. (2013-2018). These symptoms can be seen as excessive drooling, severe fatigue, slurred speech and decreased mobility and motor skills. Diagnosis was in 2018 after a fluke running of tests. Our paediatrician wanted to "just see what came up" and TANGO2 did.
A handful of hospitalizations and nearly losing him to TANGO2 complications (i.e. early stages of heart failure, CK levels of 350,000 and being resuscitated twice in one day) in 2019 made us hold him tighter than before and believe bigger thoughts of hope. He fought, and he fought, and he survived something huge.
The biggest issues we have are honestly living the unknown with cardiac complications, rhabdomyolysis and CK levels hovering over us from the past.
Regular check ups help with that though - we see a neurologist, metabolic specialist and cardiologist every 3-6 months as well as a dietician. His mito cocktail makes up a big part of Daniel's success and recovery from 2019 - since then, he was required to also have a PEG tube put in place to assist with his nutritional intake. We wouldn't be where we are now without them and the current studies we have on the disease.
Daniel, in my eyes, and many of our family members, is a true miracle and always will be.
Our journey is complicated and long, yet it is worth knowing about. This is just a snippet into our life and our past.
But our present and our future are so bright as we still have Daniel with us and he is as healthy as he has ever been. He is thriving, he's in school getting an education and he is loved. He loves his life and seeing him so grateful makes it easier living with TANGO2.