Support for Axle's Fight Against Lennox-Gastaut

Hope for Axle and the Stillings Family!

A couple weeks ago Axle had his first seizure that we know of in his lifetime. It was seemingly out of the blue and was then closely followed by MANY other seizures. Some long, some short, some needing rescue meds and some that he came out of on his own. Some seizures left Axle hypoxic and lifeless and others had him unconscious or sleeping for hours after. Axle was in and out of the emergency room a few times and an outpatient EEG and sedated MRI were done immediately. Axle was then admitted to the neurology floor at Children’s for close monitoring after uncontrolled seizures at home. They performed a longer EEG because his seizures were not being helped by medications and the doctors needed more information about the seizures themselves. He is now at home but still having seizures daily, sometimes two or three a day and medications are still being titrated up to hopefully more therapeutic levels. This all seemed manageable until just recently when Axle was diagnosed with Lennox-Gastaut Syndrome. It is a rare, but severe form of childhood epilepsy that is uncurable and means a lifetime of seizures. This is WAY harder to hear or accept than the Autism diagnosis, the global profound developmental delay, the non-verbal determination, the Gilberts Syndrome and the Epilepsy all rolled into one. The long term prognosis is not favorable, for the seizures will likely get more severe. All that can be controlled is the day to day right now and the Stillings family is focusing on caring for Axle which has now become a 24/7 affair. If you so wish to help them out by paying extra bills and helping to take away the financial burden from their day to day, they would greatly appreciate it!