Hope for KC
Our 9 year old son, KC, has intractable epilepsy, most likely Lennox Gastaut Syndrome, a rare type of progressive pediatric epilepsy with a poor prognosis. The seizures began when he was 3 for no known reason. He has not responded to current treatments over the past 6 years and continues to suffer from 5 different seizure types daily. He is not a good candidate for surgery, and there are no other medications that are likely to help. We are currently on a special diet and risky seizure medication that only helps minimally. He had regularly required his rescue med 1-3 times daily for the past several months and was having 600-900 seizures per week. We felt we were losing our son before our eyes. We feared these 100’s of seizures per week would lead to cumulative brain damage and the loss of the sunshine in our son’s eyes. We sought help from the Realm of Caring with a parent’s vengeance. We knew in our hearts we had no other choice but to come to Colorado.
We are very hopeful that KC will respond to the use of Charlotte’s Web. What we have already seen in the past two weeks has been amazing. A boy who would previously wobble and stumble as he walked was now running up hiking trails and jumping into his dad’s arms. He began to look us in the eyes when talking. We were used to it taking a minute or two for KC to get out what he wanted to say because of all the absence seizures. Now, this sweet little boy who had spoken in broken sentences, was having actual conversations. He has even been cracking jokes! Laughter and smiles now light up his face.
After nearly two weeks of treatment, he has had five completely seizure free days. There have been a few ups and downs as we work with the dose, but overall, we watch in amazement as KC seems to wake up to a whole new world. He hadn’t been able to notice Colorado’s immense beauty until now. Now when we are out for a drive, he pipes up and points out the mountains, big rocks, and read signs. “Watch for falling rocks, Mom.” His brain had been taken over by mixture of lightening and fog. We feel that with the help of Charlotte’s Web, the fog is finally clearing and the storm is settling down.
We are so grateful to the Stanley’s and The Realm of Caring for this opportunity to help our son.