Maddox's Story is shared by his mom, Anna
Maddox was strong, brave and never stopped smiling!
Around 4-5 months old Maddox was struggling to gain weight and stopped meeting milestones. We were following closely with his pediatrician and had been referred to genetics. At 7 months old Maddox had his first hospitalization. It was during this visit that we were given the preliminary diagnosis of Leigh Syndrome based on his MRI. We would go on to do genetic testing and find that he carried the ATP6 m.8993T>G mutation at 100%.
Over the next 2 years my husband and I cherished every minute with Maddox. He loved watching Mickey Mouse Clubhouse, snuggling with his dog Penny and playing in the water. Maddox traveled to 15 states getting to see the ocean, the mountains and the desert. His favorite trip was Disney World, where we made so many memories riding all the rides and meeting his favorite characters!
While Maddox is not on this Earth with us anymore I see and feel him around me all the time. I see him in my niece when she has the biggest smile. I feel him with me when there is butterfly following me outside. My husband and I also got tattoos of his name on our arms so he is always with us. Never Stop Smiling 💙
