This personal story was contributed by Debbie Flader, mom to Noel and Board Chair and Founder of the Angel Wings Foundation , which is creating a new housing model for people living with epilepsy in need of long term support. Take a minute to read Debbie’s story and learn more about the work of the foundation.
Back on February 12, 1992, Noel was a happy, healthy 8 year-old, outside playing and enjoying the warm February school holiday. That day, she came into the house crying and complaining that her “hands were falling”. What started out as a “feeling” wound up defining our lives–mouth twitching, hands feeling numb, difficulty in school, things changed forever.
We started with our primary care physician who sent Noel for an MRI, which showed no abnormality. Primary care referred us to general neurology at a community hospital. Noel was introduced to her first of many EEG’s, no abnormality. How could it be, that every diagnostic test performed showed absolutely nothing, yet Noel’s little body was twitching for up to eight hours per day? As a last resort, after many sleepless weeks, we brought our darling daughter to Children’s Memorial where she was admitted for two weeks. She went through spinal taps, EEG’s, MRI’s in an attempt to determine the cause of the relentless twitching. She was started on loading doses of two anti-seizure medications and was constantly nauseous and feeling loopy. Becki, who is two years older and Ryan who is 18 months younger struggled as they witnessed their sister in such dire straits. Finally the diagnosis, Rasmussen’s Encephalitis, a catastrophic form of epilepsy that produces up to hundreds of seizures per day and does not respond well to therapeutic treatment.
On November 4th of 1992, Noel was admitted to Rush University Medical Center for a brain biopsy and multiple subpial transection, a surgery performed in attempt to break up some of the seizure activity. Watching our baby girl being wheeled away and knowing what was in store for her was unimaginable. How could our perfect family be impacted on such a great level? The surgery went well, although the seizures continued. Since 1992 Noel has tried just about every type of medication, Vagal Nerve Stimulation, plasma pharisis with IVIG, all in an attempt to control the debilitating seizures. Noel missed an entire year of school and struggled for years due to the ongoing daily seizures.
The seizures continued
By 2000 it was evident that the epilepsy was winning the battle. The seizures have become so violent that they throw Noel to the ground without warning. She’s endured many traumatic brain injuries and has lost all hope of living an independent life. Noel uses a wheelchair to allow a minimal amount of independence but the seizures continue. She needs constant companionship to ensure her safety.
A plan for the future
Over the years our family has supported Noel, emotionally, and physically, attempting to provide a good quality of life in spite of the challenges that epilepsy presents. In 2012 we decided that Noel would need supports for the future, when her dad and I are too old to care for her. Residential services in Illinois have up to a fifteen-year wait list, that’s simply unacceptable.
Angel Wings Foundation
We decided to create a non-profit designed to provide residential services for adults with epilepsy and offer residents educational, social and vocational opportunity. Angel Wings Foundation is creating homes; warm loving homes with supports in place so that individuals with epilepsy can live life to the fullest, make choices based on their interests. We’re excited about the future and intend to build many homes; over 130,000 people in Illinois have epilepsy and 30% never gain adequate seizure control in spite of all available treatment options. The need is great. Noel is not alone and Angel Wings is dedicated to enhancing the lives of those affected by epilepsy and allow them to reach their full potential by living independently in the community.
Epilepsy may be winning the battle but we intend to win the war.
To make a donation or to read more about Angel Wings please visit www.angelwingsfoundation.net, or contact Debbie Flader at 630-400-7597.