The Burnsides: A Family Smiling in the Face of Adversity
-by Beth Dugger Brown, Troy, Tennessee
When Albert and LaChawnda Burnside started their journey together more than 23 years ago, they probably envisioned things to be different than they are now. Like most of us, they started their journey not knowing where it would end up—know ing that sometimes things work out better, sometimes worse than expected. But, three boys and several years later, the Burnsides are trucking along.
The boys, Devin, 21, Damon, 15, and Dominic, 3, are their mother’s pride. Devin is taking steps to flesh out his dream of entering the entertainment industry. He has the talent and handsome face for it. Damon is going to school, spending time with friends, and talking about playing basketball for Coach Shane Sisco at Union City High School. Dom, the baby, stays busy with an assortment of things. He was really enjoying his dinosaur figures while I sat at the kitchen table talking to his mom. He invited me to play with him, and I’m not sure which one of us had more fun.
There is one person missing from the family. It was unfortunate and unforeseen when Albert passed away in March of 2014. It was one of those hard moments that life tosses to us sometimes. I remember Albert as a big strong man who loved a clean car and taking care of his family. I know he would be proud of the men that his boys are becoming.
Another hard-life moment came to the Burnsides around the end of June 2015. Damon had been experiencing terrible migraines. He couldn’t stand to see light and was in a lot of pain. His mom, not sure what was going on, took him to the doctor. They checked a few things and said they’d let her know the results. The weekend of July 4, 2015, the family was traveling to Florida. They were four hours from Clearwater when Annette, the nurse, called and said for them to proceed immediately to the ER at LeBonheur Children’s Hospital in Memphis. Something was not right with Damon. LaChawnda turned around and drove as fast as possible back to Tennessee. When they arrived at ER around 1:00 a.m., the staff had no idea why there were there. Someone had failed to enter their information into the computer. Knowing that the hospital could not admit a seemingly healthy child without a physician’s order, the Burnsides drove home.
After arriving in Union City, everyone went to bed. They were totally exhausted, frustrated and just wanted to rest. The phones were all turned off so they could have a few hours of peace. When LaChawnda got up, she checked her voicemail. It was from the neurologist at Le Bonheur. He apologized for the mix up and asked for her to come back immediately. She packed up Damon and went back to Memphis.
After an MRI, the doctor delivered news that no one ever wants to hear. Damon was sick. It was rare, and there was nothing that could be done medically for it. Stop a minute and think about what you would do. I can’t imagine what my reaction would have been. No one knows until they are at that place. LaChawnda broke down. Damon broke down. He was only 14 then. That’s just getting started in life.
The name of Damon’s rare disease is Adrenoleukodystrophy, ALD for short. It is a genetic mutation that effects the X chromosome. It is passed down through the mother’s side and, according to www.stopald.org, effects one in 18,000 people. It is most severe in males and makes no discretion of race, ethnicity or gender. It devastates a person by attacking the neurons in the brain so that they are no longer able to tell the central nervous system what to do. Blindness, deafness, seizures, loss of muscle control and dementia are all possible with ALD. The prognosis is not good for most that are diagnosed.
Since ALD is genetic, Devin and Dom were also tested. Devin tested fine, but Dom was also diagnosed with ALD. The population of Union City is 10,749. How unusual for two boys in one city to have the same diagnosis. Fortunately, since Dom is so young there are some treatment options available. One is Lorenzo’s Oil. If that sounds familiar to you, it’s because there was a 1992 major motion picture released by that name. It was based on the true story of two parents trying to find a cure for their son’s ALD. Lorenzo’s oil is prepared from olive and rapeseed oils. It is not yet FDA approved and has limited availability.
Another treatment option is a bone marrow transplant. It is hard to find a perfect match for bone marrow, so I encourage each of you to go to www.bethematch.org and register as a marrow donor. It’s quick and painless and could save a life. After Dom’s MRI, which will have already been completed by the time you read this, they will know how his brain function is and whether he is a candidate for these treatment options.
LaChawnda said, “I have not seen Damon shed any more tears. He is too busy living life for that.” He is a cut-up and he loves spaghetti almost as much as he loves bar-b-que. His favorite spaghetti is made by his Grandma Velma. She makes it so often that LaChawnda and her mother, Sharon McDonald, are almost tired of eating it. At the end of May, he will be finished with Union City Middle School and looking forward to continuing his education at Union City High School. He told his mom that he wants to play basketball for Coach Sisco. He really enjoyed being the honorary co-captain of the UCHS boys’ basketball team for one game during tournaments this past season. You can tell he loved it by the joy on his face in the pictures taken at the event.
Damon has some favorite people who help him out. One is Tracy Bruff, who spends lots of time helping Damon find ways to do the things that he enjoys, like riding four wheelers. He also has a soft spot for his teacher, Allison Lamb, who always has time to listen when Damon wants to talk. Brittany Kendall is his designated teacher who takes him to games and bowling. Damon recently told her that she is his best friend. Chris Palmer, his PE teacher is a special person to Damon also. Of course, Coach Sisco and Michael Paul Miller are also on the list.
LaChawnda has taught her boys to be humble, to give grace and mercy to those in need, and to put God first. When you have a conversation with LaChawnda, you will not hear a complaint leave her lips. She says complaining can consume you and doesn’t help anything anyway.
She would like to see Damon receive aqua therapy and physical therapy. She feels that the stimulation would help him out with his muscle control. He has limited vision, and he does have an appointment at an eye specialist in the near future.
No one knows what the future holds for the Burnside family except the good Lord. A phrase that LaChawnda uses often is “God is good.” It’s true. God is good. Even when things are bad or when the path seems dark. If you don’t take anything else away from the Burnside’s story, please take that.