Sunday, July 19, 2009

The Gist's Story

Fletcher , age 14, and Elijah, age 7, are loving brothers that happen to have a devastating disease called Tuberous Sclerosis Complex ( TSC) . TSC is an uncommon genetic condition that causes tumors to form in many different organs . They have tumors in their brains , hearts , kidneys , eyes and skin .
These tumors are considered benign , meaning noncancerous . However , that does not mean they don’t cause any problems . The brain lesions have caused both boys to have severe daily uncontrollable seizures . As a result , Elijah has a surgically implanted Vagal Nerve Stimulator (VNS) inserted to help control these daily attacks . Unfortunately , it has had little success . Fletcher also had the VNS but his was explanted due to complications . Fletcher’s seizures are so severe and he injures himself frequently as a result, he had brain surgery to help with these seizures. We knew it wouldn’t be a cure-all, but at best a palliative measure to provide some relief. The surgery he had was a Corpus callosotomy . This actually cuts the nerve fibers between the two hemispheres of the brain. The idea behind this approach is that the seizures can’t / won’t spread as fast to engulf the entire brain, thus making them less severe. Wishful thinking. The seizures found a new pathway, and he still struggles with relentless tonic-clonic (grandmal) seizures every single day. Frequent trips to the emergency room for prolonged seizures lasting over 30 minutes are a pretty common thing in our house. We also use Versed at home to intervene and try and stop the seizures before it gets too bad. Versed is typically an anesthetic sedative used during surgery procedures. However, it is the only medicine that is potent enough to bring some of the seizures to a halt. During these seizures they require oxygen and monitoring by a pulse oximeter machine that measures oxygen saturation rate, heartrate, etc... Needless to say, our house looks like an infirmary with all the medical equipment.

Due to their neurological decline, both Fletcher and Elijah are also feed by a feeding tube. Elijah has significant issues with his kidneys as well and requires catheritzation . Elijah also requires oxygen support while sleeping at all times. Day to day care involved for both of them is time consuming and sometimes overwhelming. The physical and emotional toll is equally hard on them as they face these daily battles head on and difficult on us, the 24/7/365 caregivers.
If I had a genie, and could have one wish, it would be TO FIND A CURE. I can’t snap my fingers and make that magical potion appear. However, the mission of JourneyForJess CAN help the cause. The Beecher’s lost their precious daughter, Jess, to severe seizures. Help them turn their pain into a plan. A plan to raise funds and awareness for research towards a cure for epilepsy and Tuberous Sclerosis. Please join and support JourneyFoJess so that another innocent child does not become a sobering statistic and lose their life to the beast of uncontrolled seizures. Elijah and Fletcher are counting on you.

1 comment:

  1. Thank you for sharing your story. May a cure be found and the boys be seizure-free!!! (((HUGS)))