McKenna

McKenna is 5 years old and attends preschool. She is mainstreamed with typically developing children and also receives special education support including Speech, Occupational, and Physical Therapies. She enjoys school and loves to make her rounds, saying hi to every adult each day. She doesn't seem to care that she is differently abled than her peers and if she is aware, she doesn't spend time worrying about it. At home, McKenna loves playing with her brother Daniel who also has tango2 Disease. She also has an older brother named Jackson that passed away from TANGO2 disease before she was born. She has a love for animals and loves playing with our family dog, Hank. McKenna has a great sense of humor and is always joking around. She loves chasing games and loves watching Blippi (her favorite character, he be found on YouTube). She loves her grandparents and her aunts, uncles, cousins. She loves to take care of her baby dolls and play hide and seek. The only issue is, she forgets she's playing sometimes and never goes to find the person hiding. She's always up for anything and will answer "yes!" With excitement even though she might not fully understand what was asked. Her sense of adventure is contagious. If her brother is hurt or sad, she will bring him his blanket and try to comfort him always. McKenna was diagnosed with TANGO2 disease in 2016 at around 7 months of age, shortly after her two older brothers were diagnosed. She has a feeding tube for most of her nutrition/hydration, although she does eat recreationally as well. She is developmentally delayed in all areas, and although she has never experienced a metabolic crisis, she has struggled with severe epilepsy which thankfully is now managed well with medication. She has thankfully been medically stable and has not had a hospitalization since 2019. As parents of TANGO2 children, we know this will not last forever. We know how unpredictable this disease is, and we know these good times will not last forever. Tomorrow is not promised with TANGO2 disease. We don't know how her disease will progress, or when it will happen. We do know that we will cherish the good times, always focus on her quality of life, and continue to advocate for her always. We are so thankful for the TANGO2 research foundation funding research in to this disease so we can one day treat this disease!