Against all Medical Odds, Avery Ellis Continues to Surprise his Mother–Now with Peppers

When Life Hands You Peppers

What do you see in a small pile of random-variety peppers? Jamie Ellis saw a scrap heap, but her son Avery saw possibilities. The result was better than anyone could have imagined, but that’s been the story of Avery’s life.

Jamie knew something was wrong with Avery when he was born. The doctors kept telling her he was fine, that boys develop slower than girls. But she knew it was more than that. Avery never cried; he never slept; he never met any growth or development milestone on time.

When Avery was three years old, the doctor saw him flap his arms in the customary move of a child with autism. Testing revealed Avery had autism, but the other shoe was yet to drop.

Most kids with autism also have some other physical disability. Avery’s was finally discovered when he was five years old–mitochondrial disease, a fatal form of muscular dystrophy that has no cure. Jamie was told her son would not live past seven.

Celebrating Milestones

Mitochondrial disease affects the body’s ability to convert food into energy. The energy powerhouses of the cells, the mitochondria, do not work properly, causing cells to die early, leaving organs and organ systems damaged.

Jamie refused to accept that her son would die prematurely, and she took him to the best doctors she could find. For six years, Avery had a feeding tube. When he achieved his goal weight of 100 pounds, they took the tube out and had a party.

Avery couldn’t attend public school because it would expose his weak immune system to potentially fatal infections. Jamie homeschooled him. “We had all sorts of therapists at the house four days a week. He finally learned to say words and his life evolved from there,” Jamie says.

One particularly scary incident saw Avery in the hospital for a month. “He slept and ran fevers the whole time,” Jamie says. He was discharged home and hospice was called to the house. Avery slept for three weeks while his extended family came to say their last goodbyes.

“We thought he was dying, and he just woke up,” Jamie explains. Avery was discharged from hospice care.

Beating the Odds

We’ve had amazing doctors, especially at UF Health in Gainesville. Avery was transferred from a cardiologist in Jacksonville two years ago to a UF doctor who does heart failure and transplants. Avery is not a candidate for a heart transplant, but they monitor him.

Now 22, Avery still sleeps a lot. He’s on six or eight different medications, and he is in and out of the hospital more frequently than most. Despite the fact he stays close to home, he does occasionally pick up pneumonia, the flu or any one of many infections, all of which are very serious for Avery and usually require hospitalization.

Jamie indulges Avery’s love of theme parks with family trips on quiet weekdays when they can avoid the crowds. He can’t walk very far on his own, so they push him around in his wheelchair. At home, Avery plays video games online with his friends and eats as many hot chicken wings as he can, the hotter the better.

Avery likes to cook and help Jamie with her business, Southern Grace Manor. He helps out with the planting and harvesting of the fruits and vegetables Jamie uses in her pickles and preserves. And he makes Avery’s Peppers, the popular item he added to her menu with that small batch of mixed peppers he found on the counter.

“He wanted to make something with those peppers that people would enjoy,” Jamie explains. Avery likes hot, spicy food, so he assumed others would as well, and they did! He keeps all Southern Grace Manor retailers stocked with Avery’s Peppers, mixing up a case at a time. His next project is to create his own hot sauce.