Project Description

Tanner Berry

For three years, seven months and twenty-four days, I lived an absolute dream. I had both of my children, my husband, and their smiles. Tanner is my second child and his big brother was smitten from day one. They were inseparable. My husband was beyond ecstatic to have two little boys that he could wrestle and play with. Tanner was an amazing baby and I had big plans for him; football, soccer, wrestling, and everything else that keeps little boys busy! We had no indication that anything could be lying dormant within him.

Tanner had his first seizure at two months old. It was 60 seconds long and only in his right arm. I knew, in that minute, my life had changed forever. His second seizure was at four months and lasted 20 minutes. After that, we were referred to a neurologist in Chicago immediately. Tanner continued to meet his milestones and was the happiest child I’d ever met. Before we could get genetic testing, Tanner would suffer 13 more status seizures. When his test results came back, his neurologist recommended that we see her colleague, who is a Dravet specialist. And so began our journey in and out of ICU and EMU, on and off of medications, to and from therapies to restore skills he had lost during prolonged seizures. He never stopped smiling.

Shortly before he turned two, he had three seizures lasting longer than 3 hours each time. As a result, he had to be repeatedly intubated and suffered a severe injury. We tried multiple inhaled drugs and IV steroids to avoid surgery, but he ultimately had to have an emergency tracheotomy and spent nearly a month in ICU. Despite everything he was going through, Tanner never let it get him down. After his tracheotomy, he couldn’t speak and wouldn’t learn to sign for months. For the first few months, he could only communicate by clicking his tongue and pointing. He still smiled the sweetest smiles despite his pain and frustration.

Tanner loved going to school and blossomed there. He loved the beach and he loved the snow. He loved to jump in leaves and to dance in the rain. Tanner loved the color yellow and would point it out at every opportunity. He loved to play cars, read books, and ride his scooters and ride-on toys. He loved to dance with his brother and dad. Tanner loved his chocolate milk in a Mickey Mouse cup with a yellow straw, and would drink a gallon of milk a day if we had let him- and we did once. He loved dogs and cats and anything on four legs. Tanner loved to laugh and make others laugh. He loved to help in the grocery store, although we often got many things that I didn’t know we needed. Tanner knew we needed them though.

Tanner had a smile that could melt the coldest of hearts. He would use it when he was being naughty or when he had a particularly naughty idea. He knew just when people he loved needed to see it though. He’d smile and ask, “You good? You okay?” When he couldn’t express himself with words or signs, he would hold your face in his little hands and gently kiss your cheeks. It was impossible to be with Tanner and be sad. He was so full of love for life and people. He gave the very best hugs to everyone and somehow, he knew when people needed them most.

On August 19th 2013, Tanner was found seizing and, like so many times before, taken to the hospital because his rescue medications failed to stop the seizure. This time however, the hospital couldn’t stop the seizure either. He never regained consciousness. We all have been clinging to the memories of that last hug ever since. I miss many things about Tanner. His smile, his voice, his silly behavior, his love for life and curiosity about everything. Most of all, I miss those hugs. He was little, but he gave the mightiest of hugs! So, Lord, I ask you to hug him for us and hold him really close until we see him again.