Our daughter, Laura, had her first myoclonic seizure at 14 months old. We were living in Germany at the time — after the first seizure, we rushed to a local hospital to get her admitted.
We soon learned that the hospital did not perform the test she needed — an EEG — during the weekend. She had seizure after seizure, nearly 100 in total, without medication while we waited for her test.
Once we were able to get her the testing she needed, our daughter was diagnosed with Angelman syndrome — a genetic disorder that leads to delayed development, severe speech impairment, and problems with moving and balance. While we had phenomenal military doctors in Germany, there was no neurologist on base. I ultimately left with our daughters to seek better treatment for Laura in the US.
Our first duty station after her diagnosis was Nellis Air Force Base in Las Vegas. The wait times in Vegas were atrocious; there was only one developmental pediatrician in the whole city, and it was impossible for us to receive a second opinion in a timely manner. We also learned that in order to access care for Laura, we would have to travel out of state to San Diego, California for neurology and St. George, Utah for genetics.
The military does have a special program for families like ours called the Exceptional Family Member Program (EFMP). However, it has been very challenging to find appropriate care in a timely manner even with EFMP. Trying to find a base where we can meet all of Laura’s needs — that will also work for my husband’s work — has been incredibly difficult.
Laura heavily relies on different types of therapies to survive. Her tonsils and adenoids were removed to minimize choking incidents. She needs to continue feeding therapy to strengthen her jaw muscles. Like most kids diagnosed with Angelman syndrome, Laura also needs an augmentative and alternative communication (AAC) device to communicate. We are incredibly frightened that there will be a long wait for her to see a professional who can work with her on this device; she can say “mama,” but right now she can’t tell us when she’s in pain — as a parent this is heartbreaking.
It is not possible for Laura and other kids like her to wait for years before they can receive essential treatments — these wait times must be reduced.