“Everyone has a story”…. Indulge me as I share ours once again. This month is Atlanta’s “Walk and Roll” for GBS. I am sharing our story in honor of Drew and all the Guillain Barre survivors. Awareness is our number one goal as well as funding for research for the cause and cure of this horrible disease.
A few years ago our son Drew had aspirations of playing football in college. During his junior year in high school his performance on the field earned him the attention of many Division One colleges. He had just completed his season and was preparing to showcase his talents in combines and camps when his body began to tell him otherwise. You see Drew was feeling strange symptoms that unfortunately were all too familiar to this strong 6 foot tall 230 pound full back. Sunday, January 2nd he got up, went to church and unbeknownst to us spent the entire service praying to God that this was not happening to him again. He prayed, “Please Lord no, not again….. Anything but this”. You see Drew had endured and survived Guillain-Barre syndrome just seven years earlier and that morning he joined the less than 3% of GBS survivors that contract the autoimmune illness a second time.
Drew’s first experience with GBS was in 2003 at age 10. Drew complained of his feet “falling asleep” one morning. After an entire day of playing outside he told me his feet were still “asleep” numb and tingling. We didn’t have a clue. That was his only symptom until the next morning. He said he felt like he was getting the flu because his whole body ached. We took him to the doctor and when she left the room to retrieve her medical text, we knew this wasn’t going to be a simple answer. She said she’d never actually seen a case, but if it was what she suspected (Guillain-Barre) we should get Drew to a hospital immediately. We were so grateful for her faith that leads her to pray every morning for God to open her eyes to see her patient’s needs. That morning her diagnoses for our son was correct. Drew spent one week in the hospital and six weeks in physical therapy learning to walk and live again.
The second time was a little different. Like I said, Drew knew what he was feeling. Since his first case sometimes he would have slight “tinges” of numbness and/or muscle fatigue that returned when he got over tired or pushed himself too much. When he rested these residuals would go away. Not so this time. By 3:00 p.m. that Sunday Drew knew the symptoms were not going to leave him. He told us what he thought was happening. I almost fainted. We took him to Children’s Hospital of Atlanta at Egleston at 3:00 a.m. and by 5:00 p.m. the next day he could not get out of bed. To watch your child live through this nightmare (while there is nothing you can do to stop it), is the most helpless feeling. The thought of him having to deal with the pain and paralysis a second time almost did us in.
Drew spent two weeks at Egleston (5 days ICU). He had two IVIG treatments and then spent two weeks at the Scottish Rite Comprehensive Intensive Rehab Unit. Drew walked in on January 2nd at 232 pounds and he wheeled out January 16th at 189 pounds. Drew lost 40 pounds of muscle. Drew returned for six weeks of intensive day rehab. He was released from Children’s Healthcare after 10 weeks.
I am writing as a parent. The patient will tell you no one in the world understands but those who have lived it. When Drew was asked later on if he was thinking about his football career he said “All I was thinking about was living”. This broke our hearts.
What is Guillain-Barré syndrome?
Guillain-Barré syndrome (say “ghee-YAN bah-RAY”) is a problem with your nervous system. It causes muscle weakness, loss of reflexes, and numbness or tingling in your arms, legs, face, and other parts of your body.
This rare condition can cause paralysis and lead to death. The body begins to paralyze from the extremities inward. This is why it is imperative that the patient is hospitalized in case the diaphragm, blood pressure or heart rate is affected. Some patients spend time in ICU and/or on a ventilator
What causes Guillain-Barré syndrome?
Experts don’t know what causes it. In Guillain-Barré syndrome, the immune system attacks the covering (myelin sheath ) of certain nerves. This causes nerve damage.
Infections that may trigger Guillain-Barré syndrome
It usually begins to affect the nerves after you’ve had a viral or bacterial infection. Often it is after an infection of the lungs or stomach and intestines.
Infections that may trigger it include:
• Campylobacter jejuni, which can cause a type of food poisoning.
• MycoplasmaMycoplasma, which can cause pneumonia.
• Cytomegalovirus (CMV), which can cause fever, chills, sore throat, swollen glands, body aches, and fatigue.
• Epstein-Barr virus (EBV), which can cause mononucleosis (mono).
• Varicella-zoster virus, which can cause chickenpox and shingles.
What are the symptoms?
• Numbness or tingling in your hands and feet and sometimes around the mouth and lips.
• Muscle weakness in your legs and arms and the sides of your face.
• Trouble speaking, chewing, and swallowing.
• Not being able to move your eyes.
• Back pain.
Symptoms usually start with numbness or tingling in the fingers and toes. Over several days (or less depending on the severity of the case) muscle weakness in the legs and arms develops. After about 4 weeks, most people begin to get better .
Call your doctor or get help right away if you think you might have Guillain-Barré syndrome.
I can’t stop there without telling the 3rd chapter because it is the best. When Drew returned home he told us that he still wanted to play football. We were skeptical due to his weakness and the little time he had remaining in high school. He had missed an entire semester due to GBS. But it was not our place to make that decision for him. Drew’s faith was strong and we know that God is sovereign and that all things are possible with Him. Who were we to tell him “no”?
Many of you walked through this with us as friends, family and caregivers . We are forever grateful for the support you have given us over the years. I am taking the opportunity to share online once again as this month our local GBS Foundation chapter has their “Walk and Roll” fund-raiser. We are asking everyone to consider donating $5.00 (or more) in honor of Drew or someone you may know that has had GBS. Five dollars is nominal and if everyone donated that much we would be able to help future GBS patients.
Link to donate to GBS Foundation
With a lot of prayer and determination Drew worked very hard to get his strength and coordination back to playing level. One year after returning home from the hospital, Drew was recruited to play football for the United States Air Force Academy. He is currently in his 3rd year at the Academy.