Lillian loves dancing and playing with her sisters and cat. She is a sweet, loving, kind, and playful. She is always happy and smiling. She was meeting all her milestones except walking.
When she was 15 months old (September 26, 2020) I woke up and she was unresponsive. We immediately called the ambulance and they checked her blood glucose level and it was a 33. We were rushed to Stonybrook Children’s hospital where they immediately started doing whatever they could to keep her stable. She was kept sedated for a week. When they stopped the sedation, she woke up and almost immediately was back to the same Lillian she was before. We stayed another week for monitoring. While she was in the hospital, she had a irregular heart beat (a long QT) so when she was discharged she had to wear a wireless heart monitor for a week to see how her heart was.
Two weeks after discharge is when we got the results back with the TANGO2 diagnosis. Lillian had a second episode (December, 31 2020) of low blood sugar that resulted in hypoglycemia. We were discharged after 3 days of monitoring. The day after being discharged we got Lillian a Dexcom g6 and haven’t had any major incidents since.
Now Lillian is 2 1/2 years old and thriving. She is walking and loves to climb. She dances and plays with her sister like any other child would. You would not know anything was wrong with Lillian if you spent time with her. She’s incredibly strong and brave.