Alex and her twin sister Jaci Alexandria (Alex) Hermstad was a growing, healthy, and thriving young lady. Her mom Lori, dad Jeff, and sister Jaci (Jay-cee) was just getting adjusted to their new home. She was 11 years old when her symptoms began in April, 2005. Alex loved sports, riding her horse, snowmobiling and basically anything that had to do with the outdoors. In the spring of 2005, Alex went to a pitching clinic as she enjoyed pitching on her softball team. Shortly thereafter, her left elbow had pain and swelling. We attributed it to a sports injury. Weeks later, there was still swelling and soon she couldn’t bend her arm anymore. Alex has a strong spirit. She was trying to handle all of this herself. The arm became weaker and soon she could not raise it anymore. She had atrophy behind her left shoulder from nonuse. She pitched her last softball game in June, 2005, the night before she had to travel to go through a battery of tests. Our family doctor thought she had a brain tumor. That night we spent praying. After many tests, doctors could not come to a conclusion what was wrong with Alex. She did test positive for a bacteria called Mycoplasma pneumoniae (walking pneumonia) and had a pleocytosis (white blood cells that indicate infection) in her CSF, or cerebrospinal fluid. Genetic damage and neuromuscular testing came back normal. Doctors prescribed an “immune-boosting” treatment called IVIg’s (intravenous immunoglobulin). We began monthly treatments.
Our family took a vacation in July, 2005 to the Black Hills and her symptoms progressed. We urged the doctors to be more aggressive with the treatments. We increased the frequency to twice/month IVIg. Still, Alex grew weaker. In August, 2005, we went to a world renowned medical facility in a neighboring state. They told us Alex’s motor neurons were affected, but they didn’t know why! She did test positive for West Nile Virus, but they thought it was a false-positive generated from the IVIg’s. The doctors informed us Alex was going to die and there was nothing they could do- and made no attempt to try. Her dad and I could not contain our emotions and we began to cry. I felt numb, the room was spinning and I thought, “how can I comfort her?” She asked us, “AM I GOING TO DIE? AM I GOING TO GET TO GO TO HIGH SCHOOL??” After the doctor said to take as much time as you need, I will never forget leaving, 100 eyes from the staff were staring at us as we walked away. How could they tell us she would die when they couldn’t even give us an accurate diagnosis? How could they not even try to get us answers?
In October, 2005, we saw yet another doctor. He repeated many tests and ran new ones. . Nothing came back conclusive, just more of the same. Someone contacted us and asked if we had looked at our 14-year old house as the possibility of an “environmental.” problem. Jeff tore a piece of sheetrock off in the basement and sure enough, there was mold. We also had leaking pipes in the basement. In late October, we left out home, our dog, and all our belongings. Everything we owned, everything that we held dear to us, we had lost. We were now basically homeless. We were told about a specialist doctor in Texas, and so we drove all the way from Iowa to see him. Unfortunately, this man took advantage of us and took almost every dime we had.
Alex Hermstad By December, 2005, Alex fell and walked for the last time. She laid on the floor and I couldn’t pick her up. I don’t know who was more scared, her or me. Shortly thereafter, she could not raise her right arm anymore to feed herself. A friend had told us about a urine test out of the Netherlands. At this point we had nothing to lose and tried it. Two results came back. One was a strep bacteria infection with a fungus-like appearance and the other one was Lyme Disease with a secondary organism. This led us to seek out a Lyme doctor. She did test positive for one of the tests, but unfortunately, this test was not FDA-approved. Although, she did test the highest this test can assess. We started her on IV antibiotics in early February, 2006. This made her worse and the paralysis progressed.
Within three weeks, she went into respiratory distress. Doctors told us to gather the family and that she would not survive the night. “She will die” they told us. Her blood carbon dioxide was high enough to cause brain damage. The doctors underestimated Alex’s will and strength and she survived the night. Two nights later, the carbon dioxide levels spiked again and we gathered around Alex’s hospital bed to pray. Again, she survived. She fought and later, a counselor spoke with us and told us Alex was being so strong because we were being so strong for her. According to the counselor, “She can’t feel her pain unless you show her that you are hurting.” Her dad and I met with our Pastor, and carefully poured our hearts out to her. We told her we were so mad and upset that we couldn’t make her better, especially because that is what parents are suppose to do. We were mad this was happening to her…no answers!!! We cried, we sobbed, and we were broken. We waited for Alex to cry. She never did. Later I asked Alex, “Why didn’t you cry when your dad and I poured all our feelings out to you?” She said, “Mom, there was something about having that bipap strap between my eyes!” Alex became my hero! I know I could have never been as brave as she has been.
After three weeks in the hospital, her gases started to climb again. The gripping decision of ventilating her was drawing near. We had to decide to either let her die, or go through with ventilating her. We asked her what she wanted to do and she said, “FIGHT”. This is the kind of girl our beautiful Alex is. She chose life. (When Alex was first learning how to ride her bike, she wouldn’t wait around for help from me or her dad, she improvised and worked until she got it…until she got it right).
She was airlifted to a children’s hospital several hours away. A week later, Alex had a tracheostomy and a G-Tube inserted. She spent a total of almost 5 months in 3 different hospitals. There hasn’t been a day that Alex hasn’t fought.
Alex was in three different hospitals from February, 2006 – June, 2006; away from her home and away from her friends. She has always found great pleasure in playing jokes on people. We have found throughout her illness how arrogance has an abundance of showmanship from the medical field. We have been looked at as a number or past history. We have learned and seen the lack of compassion and caring by the medical professionals we have met. We live in a small town in rural Iowa and have not been able to go to large research hospitals. We have searched and searched for doctors and researchers and have received few responses. I find it hard to accept that people forget so easily how they would like to be treated. Whatever happened to the Golden Rule? We wonder about these doctors that have given up on us…how far would they go for their child? Although, we can say that one faithful doctor has become a great source of strength and knowledge for us. He is a neuromuscular geneticist and has always had an open mind but truthful. He takes the time to ‘listen’ to us and has always returned emails as well as searches for answers. One example of his immeasurable compassion was prior to leaving the country he explained to Lori, “Don’t hesitate to call me, I’m only leaving the country, I’m not leaving the world.” Upon hearing the news that Alex and Jaci are identical twins, he now believes in our theory that Alex’s illness is, in fact, infectious.
Even though Alex may not be able to move, she continues to move people’s hearts.
Alex is currently at home with her mom, dad, sister, and the family dog, Gracie. She continues to “Choose Living” every day.
Her website is:
www.caringbridge.org/visit/angelsforalex