The story of Lillian
Lillian is a beautiful, smart and loving 2 year old. When she was 14 months old she was unresponsive on the morning of September 26,2020. She was rushed by ambulance to hospital where they immediately start checking everything they could. Her glucose level was 22 and later dropped to 14. They were able to get her levers normal and her heart was a irregular beat. She had a long QT. They were baffled because they couldn’t figure out why this was happening. They were testing here for everything. The first week in the hospital she was sedated. She had a breathing tube and a Feeding tube and regularly getting EEG’s, EKG’s and blood work. They decided to take her off the breathing tube and stop the sedation. The second week in the hospital we got her back to eating solids and just keep monitoring her. They decided to discharge her. 2 weeks after being discharged they let us know they finally had a diagnosis. Lillian has a extremely rare genetic disorder called Tango2. It can effect many different parts of the body. The heart, brain, kidney, muscles, sugar levels and so much more. Some effected have seizures and heart attacks. She was the first and only patient ever diagnosed at that hospital and on Long Island, her doctors have never even heard of this disease before her diagnosis. There are about 130 confirmed cases worldwide. There isn’t much information on the Internet because this disease is so rare And unheard of that there’s barely any research being done. Now Lillian is doing very well. She has a Dexcom to continually check her glucose levels so we can prevent her from going into hyperglycemia. We struggle everyday trying to make sure Lillian is eating well and trying to prevent her from getting any type of sickness because it can trigger a metabolic crisis.