Madeline was perfectly healthy until age 11 months when her first fever turned out to be Infant Leukemia, a poor prognosis cancer. She was treated with intense chemotherapy but was still developing normally and handling the chemo well. Then at age 25 months, she began having seizures. She was diagnosed with Infantile Spasms, another devastating diagnosis. It is extremely unusual to have both, so the thought was that if the chemo was stopped, the seizures might stop as well. Unfortunately, after taking the risk of stopping her chemotherapy protocol early, the seizures have never stopped.
Now at age 7, Maddie remains in remission from her leukemia, thankfully. Her epilepsy has been much more challenging. With the exception of 2 months in 2010, she has never been seizure free. In 2010, her epilepsy evolved into Lennox Gastaut Syndrome, another of the catastrophic epilepsies of childhood. Over the years, she has failed 13 anti-epileptic medications, the ketogenic diet, and IVIG therapy. In the summer of 2013, she underwent corpus callosotomy brain surgery in an attempt to stop her devastating drop seizures which made her extremely prone to injury. The surgery was successful for a short time, seizures were reduced dramatically and the drop seizures were gone for three months. When they returned, they came along with two other dangerous seizures types that had also been relatively well controlled after surgery. At that time, her parents made the tough decision to move her to Colorado for treatment with Charlotte’s Web cannabis oil. It was particularly difficult because Maddie’s dad is in the military and was not able to move from NC with Maddie and her mom.
Almost immediately after beginning treatment with Charlotte’s Web, Maddie began making gains in development for the first time in five years. Her seizures have also been reduced by about 50%. Her family is extremely thankful that cannabis oil is available to children in Colorado and they are fighting to make it legal in NC so that she can return home and the family can be reunited.