Testimonials
Families Share Their Journey
Our family’s story is one of resilience, determination, and an unshakable hope. We are the parents of two beautiful children, Antonia, 16, and David, nearly 4. Both of them are bravely fighting against a rare and challenging genetic condition: the SUCLG1 mitochondrial mutation. This journey has tested us in unimaginable ways, but it has also revealed our inner strength and the depths of our love for our children.
On December 31st, Harper's dad found her unconscious and not breathing, leading to a terrifying journey of seizures, comas, and hospital stays. Diagnosed with a severe POLG mitochondrial disorder, Harper has battled through unimaginable challenges, including liver failure. Despite her struggles, Harper’s spirit remains unbroken—she still smiles, laughs, and brightens the lives of everyone around her. At just 2 ½ years old, her resilience and sense of humor shine, showing the world her unyielding strength and love for life.
Branden Christian Petro, my brave son, is the light in my darkest moments, and his smile, laughter, and voice are deeply missed. Despite the unimaginable pain of watching him suffer, his strength continues to inspire. Mitochondrial Disease may have taken so much, but it will never take away his courage. I cherish every moment and urge you to hold your loved ones close, for time is precious. Branden, you will forever be the center of my world. I love you always, until forever is no more.
On April 11, 2022, I found my son Sarhan going unconscious and vomiting nonstop, we rushed to the hospital and found he was having a seizure, after several visits to doctors we came to know he is having POLG Mitochondrial disorder which we never heard about.
Every day he faces new challenges like managing energy levels, dealing with body jurks, seizures and many more but our little one is incredibly strong and keeps surprising us with his determination.
Every day he faces new challenges like managing energy levels, dealing with body jurks, seizures and many more but our little one is incredibly strong and keeps surprising us with his determination.
Tucker was born in September of 2021 after a healthy pregnancy and smooth delivery. He was perfect on the growth charts and we were over the moon as first time parents. In Tucker's first year of life, he had some feeding issues and muscle issues that were written off as "normal" baby issues and that he would outgrow them or catch up.
At 17 months old, Tucker kept having odd spells where he would become wobbly and his eyes would roll around. As first time parents, we just thought that he was overly tired. Every day he faces new challenges like managing energy levels, dealing with body jurks, seizures and many more but our little one is incredibly strong and keeps surprising us with his determination.
At 17 months old, Tucker kept having odd spells where he would become wobbly and his eyes would roll around. As first time parents, we just thought that he was overly tired. Every day he faces new challenges like managing energy levels, dealing with body jurks, seizures and many more but our little one is incredibly strong and keeps surprising us with his determination.
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