Danny was born November 6, 2020. After two weeks of nursing like a champ, he stopped defecating and the colic ensued. We saw GI specialists and chiropractors for help. At 7 weeks old, while at his uncle’s wedding in Florida, he started having seizures. We went to a local hospital and were admitted for 5 days of countless tests, EEGs, failed spinal taps, etc. He started anti-seizure meds, and when we returned to Cleveland we started the testing process again, adding more medications but the seizures continued.
In February of 2021, the genetic testing came back and Danny was diagnosed with Glut-1 Deficiency. The doors to allow glucose to the brain for energy are broken in his brain. He was 3 months old when he started the medical-grade ketogenic diet, the first-line of treatment for this rare disease. The diet helps the brain use fat for energy, rather than glucose. Unfortunately, the diet is rough on the gut, which was already an issue with Danny, and we spent the next few months in and out of the hospital, often with status epilepticus, which is a seizure lasting longer than 5 minutes and requires rescue meds to get him out of it.
Danny sees countless specialists and doctors on a regular basis. We traveled to Texas for the Glut-1 specialist and Chicago for a CVI specialist. He does all the therapies. His medication cocktails have changed so many times, but we still struggle with seizure control.
When he started eating solids, Danny’s mood improved and we finally began to see what a happy, smiley, and loving little boy he is. He eats most of his food by mouth, but has a G-Tube for medications, supplements and additional fluids. And while it has been a difficult 2.5 years for our whole family, we know he is our greatest teacher. He has an older brother and a new little sister who adore him. He loves being outside, walks, swimming, snuggling, and fortunately for us, avocados. We try to make every day the best day possible for him.
Everything we do, we do for Danny.