Jocelyn is 24 now and has turned into a beautiful young lady. It’s truly amazing how far she has come despite suffering from AHC her entire life. The day after Jocelyn was born, she had her first AHC attack. Doctors did not know it was AHC, so it was misdiagnosed as epilepsy – for three years. 911 calls, hospitalizations, a multitude of drugs – nothing would stop the AHC attacks. At age three, she was officially diagnosed with AHC by Dr. Kenneth Silver. This began a new course of treatment, however, the attacks have never decreased in frequency or severity. Over the years, she has had the “typical” AHC triggers- water, sun/lighting, heat/cold/wind, loud noises, etc. Any type of excitement – good or bad – can bring on attacks. So for Jocelyn, AHC can make a good day bad and a bad day horrible. Holidays are especially difficult. All this has created persistent anxiety, which itself can bring on attacks. It’s a vicious cycle she lives with, and it is frustrating, alienating, and at times, devastating.
In her teenage years, Jocelyn experienced three seizures, all due to new medications to help with AHC symptoms or anxiety. These were devastating to watch her have, but they did not reoccur after weaning off the medications. Fast forward to October 2020. She had a focal to generalized tonic-clonic seizure that would not stop without rescue medication. That put us on high alert for months. Life got back to “just” living with daily AHC challenges of continued quad, hemiplegic, and dystonic attacks. Then in March 2021, our lives changed again when Jocelyn had another focal to tonic-clonic seizure. This started a year of monthly to bimonthly seizures that meant more calls to 911, ER visits, rescue medications, starting AEDs, and the ketogenic diet, and enduring many side effects from AEDs. Just like AHC attacks, we learned to be as ready as we could and be ever so thankful for strong and joyful days. Her last seizure in February 2022 did not stop with our rescue med at home, and she went status epilepticus. This time it meant being intubated, having inpatient hospital stays, and more medication changes.
AHC attacks and seizures have taken a toll on her body physically, emotionally, and spiritually. She asks many questions about why she has to go through these daily trials. It is heart-wrenching to hear her ask these questions and continue to have AHC attacks. She continues to ask us and family/friends to pray with and for her. When she hears about a new child diagnosed, she wants to know “what kind of AHC do they have” and “are they having a strong day?” We will never stop praying for Jocelyn and her AHC friends. Through it all, she finds joy in the little things and keeps fighting.
We are asking you to join Jocelyn in this fight. Any donation to AHCF is welcome and appreciated. For every dollar donated .90 cents goes to AHCF. Please bring hope to Jocelyn and the hundreds of other children and adults who live with AHC every day.
With love, J., Heather, and Jocelyn