Kane our hero

USA, December 2020: By Tammie Deese, mother of Kane (almost 3):

Kane was born in January 2018, a healthy baby boy. He was doing very well for the first few months of his life, drinking perfectly from his bottle and gaining weight normally.

Then I had started to notice he was getting very fussy and agitated drinking from his bottle, sometimes taking hours just to finish his milk. Over the next few months I had taken him multiple times to his doctor asking for advice, and questioning why his head circumference was only in the 3rd percentile. After not really getting any help or answers, and noticing my son's weight declining, I brought him to a pediatrician who listened to my concerns, and thinking he might be suffering from infantile spasms, rushed us by ambulance 6 hours away to our nearest children's hospital. There they found that Kane had microcephaly, was aspirating his milk, and had failure to thrive. A feeding tube was put in his nose, and a few weeks later when he was 7 months old  he had a surgery to get a g tube. Kane was finally getting nutrients and was a lot happier and healthier.

But developmentally all he could do was roll over. He was seeing speech, occupational and physical therapists twice a week. Kane was also diagnosed with hypotonia.

And then after a few more months of doing just fine, Kane started to get sick with constant trips to the emergency room and doctors office with reoccurring strep throat and ear infections. He was barely keeping down his tube feedings, and once again losing weight. At age 18mths we took Kane to see an ENT doctor and decided on Kane having surgery for a tonsillectomy, and noidectimy, his tongue tie released and tubes put into his ears. The surgery went well, and they placed Kane into my arms immediately after surgery. He was in a lot of pain, so they administered fentanyl, more than his little body could handle and he immediately overdosed and stopped breathing. After what seemed like a lifetime of me screaming for help, the anesthesiologist ran in with Narcan and bought him back to life. Kane healed quickly from the surgery and has been thriving ever since, he no longer gets sick and he is gaining a healthy amount of weight.

We went and did genetics testing to find out what caused his microcephaly and hypotonia and developmental delays. In November 2019 his results came back that Kane had TBR1. With Kanes ongoing therapy and a lot of family time playing and learning, Kane now at (almost) 3 years old can sit, roll and crawl all over the house and plays with his toys.

He has come such a long way and he is the happiest and sweetest little boy in the world. He is our angel and our hero.