Johnny is a brilliant 11 year old boy. He has always been that way – brilliant. Enjoying books and flashcards at 2 and 3, carrying around his Grandma’s medical books instead of toys, fixing computers for his mom at 7 just before they were headed for the trash – he is a brilliant boy. He also is one of a small group of child members of Mensa, the high I.Q. society. Additionally, he is a remarkable musician–playing alto and tenor sax along with electric guitar and piano. He plays in a blues band and has been a valuable member of his band playing in coffee houses, festivals, parades and even entertaining the elderly in nursing homes! Well, in a nursing home is where it began.
It was February and his band was doing a 2 hour show at a nursing home. About one hour into the show Johnny appeared ill. Dressed in his finest black and white apparel, with his Great Grandpa’s dress hat from the 40’s, – he wasn’t doing well. Johnny never has liked to disappoint and he always conducts himself as a professional. He wouldn’t get off the stage, he was getting anxious, emotional, uncomfortable, unsteady – he was missing notes and he wouldn’t step down. He continued with the show but he wasn’t well. I knew something was wrong and I feared that it could be something quite serious. I took him to the doctor after doing some research on the symptoms. I had a startling proclamation for his pediatrician – ‘Please test him for diabetes’. “He got terribly ill on stage and, for the longest time he is drinking more, eating more, not gaining any weight and this quiet, compliant child gets into an emotional uproar when he cannot have food or water – this is not typical for him”. I knew that he looked well, but I knew that he wasn’t. The doctor tested his urine and told me, “he doesn’t have diabetes…. it is okay Johnny to be hungry, it is okay to be thirsty”.
As we left the doctor’s office Johnny said to me, “I feel as though I have just been through a counseling session”. I agreed with him. I assured him that I will get to the bottom of what is wrong with him. He looked relieved. For three weeks I tried to unravel the puzzle that was before me. I used all of the resources that I had to try to get help for my son. The computer was running through the night as I searched these symptoms trying to figure out other things that could be causing his symptoms. I also corresponded with the Mensans that I regularly communicate with through Johnny’s affiliation with Mensa – trying to figure out, if it is not type 1 diabetes then what can it be?
Meanwhile, my talented boy got called to come to NBC’s America’s Got Talent audition in Chicago at McCormick Place. To me he was looking thinner and having less energy – I worried that he wouldn’t be up to performing. The auditions lasted from 8:00a.m. to 4:00 p.m. My devoted musician ‘wowed’ the producers, reporters and fellow talented contestants. He played non-stop for cameras that were swinging around him like a great big octopus. He dazzled during the first audition! Auditions were supposed to be less than a minute per contestant, they afforded him nearly 15 minutes. They asked him an abundance of questions and sent him on to meet with executive producers and play for them. Unfortunately, this undiscovered health issue was taking the toll. It was 2:30 p.m., he had been playing for nearly 6 hours and had interviewed with NBC Chicago. Now he needed to be dazzling and he was not feeling well. The first group of producers had told him to play “Sir Duke” by Stevie Wonder for the next group of producers – he forgot those instructions when they asked him what he would be playing. He tried to explain but he just wasn’t himself, he went on to play the wrong song and then his dad stepped in and explained that he was supposed to play “Sir Duke” – they allowed him to play it but the fact that he mentioned the incorrect song seemed to change their opinion of his abilities (I believe they thought that he was shy on stage – he is quite the contrary).
We still felt that his accomplishment of being one of only a very small group to go on to a second level was accomplishment enough – but, in the back of my mind, I still new that there was a reason for this ill-health and its negative impact on his performance and well being.
Back to the doctor – I decided that the urine test was just not enough, we needed to take blood. I insisted that we get a blood test because I still think his symptoms are in line with type 1 diabetes. The nurse wrote down my suspicions again and in came the doctor. Urine sample indicated that he spilled glucose. The doctor cried. Shortly thereafter the test that changed our lives – his blood sugar was 437, he had lost 6lbs in 3 weeks and we were off to Children’s.
Now, after March 16, 2009 we have a new life, filled with finger pricks and insulin pens, counting carbs and deciphering blood sugar changes – determining why to so many scenarios so that we can keep him safe while getting accustomed to this new way of thinking. He struggles with terribly high numbers as it relates to situations with his passion – his band. He gets a strong adrenaline rush which causes his liver secrete glucose unpredictably. With these high numbers, which don’t respond well to insulin, he gets weak, irritable and stomach aches – not a good combination for a little powerhouse sax player.
My bright boy wants it to all be okay, he wants to change the world and now, since Type 1 is part of the world that he knows, he wants to change that too. He was diagnosed less than three months ago already managed to host a benefit, with his band providing the entertainment, for type 1 diabetes research. He has done an interview for the newspaper and already become a true advocate. He wants to make a difference, he is hoping the $1,500 that he collected with be one step toward making a difference. My boy, with the loving support of his family will not give up – he will work toward managing this disease but also keep working toward curing it, first through building awareness, next through building commitments and finally, through building a career – medicine is his destiny and one day, as he tells me, playing a role in the cure of type 1 is his calling.