When I first met the Stidham family, I had no idea how powerful their story was going to be.
Last April, Status Home Design had a booth at the Braselton Antiques/Garden Festival. It was a beautiful, sunny Saturday afternoon and the Stidham family approached our area and inquired about two hubcaps lying in the grass. Derrick Stidham purchased one and I insisted he take the other as a gift. I asked if he was a collector, (because that's usually a collector’s item) and he said, "No, I turn them into trophies." I instantly lit up because I knew he was making something very interesting. He told me they were having a car show the following weekend to raise money for research on their son’s disease. I proceeded to tell them how I write a blog, and this would be the perfect story I would want to share. We exchanged numbers and I told them I would be in touch.
What came next, I can honestly say, forever changed my life. I called Faith Stidham and set up a time to come to their house, chat with her, and take some photos. I thought the focus of the story was going to be on the trophies, but I was sadly mistaken.
Going to the Stidham home that day and learning about their son's disease was heartbreaking. What this family was going through was something no parents should ever have to face.
Right now, their son Eli is eight years old, soon to be turning nine. He wasn't diagnosed with Tay-Sachs disease until he was six. Let's go back to Eli's beginning... Eli was born perfectly normal - perfectly healthy. Faith explained, when Eli was 18 months old, he had his first seizure. By the time he hit his second birthday, he had a seizure so severe he needed to be hospitalized. She said he had 27 seizures in two days, and the doctors couldn't find a way to stop them. During that hospital stay, Eli had an MRI and they found cortical dysplasia. That means part of the brainstem is not releasing information to the brain. At the time, the doctors thought this dysplasia was causing the epilepsy. Faith had a gut feeling there was something more. She felt he had something more severe going on inside him than epilepsy.
Eli was given medication to control epilepsy, but it didn't help. He had a Vagus Nerve Stimulator put in his chest that leads to his brain. It did not stop the seizures, but it did lessen them. Faith said it's kind of like a pacemaker, and it affects the nerves to the brain.
Tay-Sachs is an awful disease. Faith explained, "It's a build-up of fatty acid on the brain which causes sections of the brain to become deprived of all functions and die. A person with Tay-Sachs slowly loses different functions; walking, eating, hearing, eyesight, etc. "Eventually the part of the brain controlling the heart will die as well." The following information was taken from http://www.curetay-sachs.org
Tay-Sachs Disease (TSD) is hereditary. A mutation in the Hex-A gene causes the body to have no or very low levels of the Hex-A enzyme. Without Hex-A, cells (especially nerve cells in the brain) are unable to break down fatty waste products. The waste products begin to build up inside the cells causing them to swell and eventually die.
Since the Hex-A gene was isolated in 1985, it is believed there are between 75 and 100 different mutations that can cause TSD. The various mutations can result in Infantile (most common), Juvenile, or Late Onset. The Infantile and Juvenile forms of the disease have never been treatable and have always resulted in death. The Late Onset form works at a slower pace but continues to progress as cells clog with waste products.
The pace of the disease is directly related to the amount of Hex-A the affected person has. Infantile cases generally have no Hex-A present, and therefore, the disease progresses very quickly, often resulting in death by age 3. The damage caused by the gene mutation actually begins to occur in the fetal stages of development, but symptoms are often not evident for months after birth. Most TSD sufferers appear totally normal at birth and for some time after that.
As I'm sitting in the Stidham family room in complete shock about what she is telling me, I asked the horrible question, "What is Eli's life expectancy?" Faith tells me that for Juvenile Tay-Sachs, the life expectancy is approximately ten years. I do some quick math and realize Eli is about to turn nine years old. I cannot fully express the pain I was feeling in that moment. I'm looking at this mother and this beautiful child sitting in front of me. She's watching his health deteriorate. She's been watching him decline for the past six years. This is nothing any parent should ever have to go through.
Faith explained he is slowly getting worse. He has a condition called mitro-valve prolapse which affects his heart. His lungs are very weak and it’s difficult for him to breathe. Eli receives oxygen and a CPAP machine at night. During the day, Faith has some assistance with his nurses, but at night she's on her own. Faith sets her alarm and wakes up every two hours to check on him. She has monitors and alarms, so if he moves or coughs, she's in his room in a flash.
To raise money for Tay-Sachs Disease, the Stidham family started the car shows. Eli loves cars and, of course, his favorite TV car is Lightning McQueen. Sitting in their family room, Faith has baskets of toy cars under the coffee table. Derrick came up with the idea of the trophies as awards for the best cars. This is where the hubcaps came in. On May 5, they hosted a car show where approximately 50 cars participated and they raised $1500 for Tay-Sachs research. The foundation is called The Cure Tay-Sachs Foundation. You can view Eli's Facebook page @eli'scruiseforacure
Right now, Eli is extremely fragile. Faith explained the flu almost took his life this year. He is no longer able to swallow and eat on his own. All his nutrients are put through a gastric tube five times a day.
If you would like to learn more about Tay-Sachs Disease, or would like to donate, the websites Faith shared with me are below. I will ask all of you to pray for the Stidham family and their difficult journey. I feel blessed to have met this wonderful family and hope I am able to shed some light on Tay-Sachs Disease. Letty
Cure Tay- Sachs Foundation
National Tay- Sachs and Allied Diseases
**The Stidham family and Status Home Design will be working to put together another Eli's Cruise for a Cure Car Show. Stay tuned for the date of the event.
June 29, 2018