My Nephew and his Brain, Part 4 – Their Life Today

Continued from Part 3. After the surgery we were hopeful, that with a few limitations on his left side, my nephew would have a fairly normal life. Unfortunately, this was not to be. The faulty electrical impulses that had caused his seizures had migrated to the left lobe and a few days after surgery the seizures returned. It was true that they were milder than they had been before; he no longer stopped breathing when he had them, so some good had definitely come out of his surgery experience. They weren’t gone, however, so he spent another month in the hospital as the doctors tried a staggering amount of drug cocktails on him trying to figure out the best combination for controlling his seizures. None of them worked perfectly, though, so even today at the age of seven, he still has multiple seizures a day.

Under that kind of duress, his brain hasn’t been able to develop and he is pretty much an infant in a little boy’s body. He can’t walk or talk, and he has myriad medical problems due to his developmental difficulties. He has a problem with coughing, so mucus builds up in his lungs and he has been hospitalized many times for pneumonia. He has had hydrocephalus and now has a shunt that moves cerebral-spinal fluid from his head into his digestive tract. Because he has trouble swallowing, he is fed through a tube with a liquid diet and his digestive troubles have landed him in the hospital at least twice. He also has more doctors and specialists than an HMO, and his daily medication regimen keeps his local pharmacy in business.

But, in spite of everything, he has the most beautiful smile in the whole wide world, and even though he is limited in how much can tell us, that smile tells us when he is having fun and enjoying life. We try to do everything we can to coax out that smile, and we have found that adventures with his family can make it appear faster than anything. So, my nephew has been to Walt Disney World, Canada, the Bahamas, Mexico, the Grand Canyon, and just this last summer, Australia, in addition to his numerous trips all over the country to visit relatives. And, it is our sincere hope that we will be able to have many, many more adventures with him for the rest of his life because this kid is truly one of a kind.

Editor’s note: this is the fourth and last part of a series offered by Flummerfelt. Read parts one, two, and three.

  • Thank you for sharing your nephew’s story. So hard on those who love him, but It was good to hear of the love and persistence of his family in getting him care and seeking out pleasures for him. Inspiring. We have a special needs child, but different issues.

  • David Stein

    Very touching story. My heart goes out to your family. Seizures are tough. And the medication for them can be a really rough road. Keep the faith. Science is always moving forward. There may not be an answer today…but there’s always tomorrow.

  • Micki Daniel

    Thanks so much for sharing. My daughter began having seizures when she was 17. She is now 23 and hasn’t had a seizure for three years due to the medications. She also stops breathing with her seizures and no one really understands how horrifying that can be. I worry daily that she will forget to take her medicine or become careless about the timing. She drives a car, swims, climbs stairs.. things we take for grated but that could easily be fatal is she has a seizure. I wish your family the best.

  • Rockon

    Thanks so much for sharing the great topics…..

  • Very touching story. It is also very interesting to me to listen, read, talk about seizures. Such a debilitating process for the individual and often times the “reason” behind them is unknown. At The Specific Chiropractic Center we see many patients with seizures and seeing a few of them regain their hope is an amazing thing. I hope the best for your family … It sounds like he has the most important part of healing down and that is love, family, and friends.


    Thank you for sharing this touching message about your nephew.i know how the family feels about the person they love so much.But God is there to see them through and he is our healer whom we should always depend on each time that passes regards go to family and friends.

  • Anya Kate

    Thanks for the love by the family and courage to share this experience. It’s inspiring. I hope we’ll all learn from it.
    No matter the situation, let’s not loose hope. there could be light at the end of the tunnel.

Karen Flummerfelt, MS

Karen Flummerfelt, MS, has been a lab instructor in microbiology at UCLA for the past four years with a nephew who is a neurological marvel. Currently, she is a lab instructor for UCLA Extension and an online faculty member at the University of Phoenix. She holds a master’s degree in Microbiology from UCLA.

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