Adrienne Leigh Ingram

Adrienne Leigh Ingram

June 25, 1979 – December 2, 2007

By Beverly Ingram

My daughter Adrienne was born when I was 32. For the first seven years of our marriage, my husband Tom and I thought that we did not want children, but we changed our minds. We were thrilled when I got pregnant and our precious 7lb, 9oz baby girl arrived at 9:27 on June 25, 1979. After she was born, I was euphoric. I adored her as soon as I saw her. I hadn’t known that this kind of intense love existed. We brought her home and she slept through the night at eight weeks.

She was such a calm baby. She smiled early and was a happy baby. I could take her anywhere. She rarely cried. I breast fed her for 4 months until I had to go back to work teaching 4th grade. It broke my heart to leave her with a babysitter, but at least my babysitter was a friend from church and Adrienne was the only child she sat. She adored Adrienne too.

Adrienne seemed to turn over, sit up, and crawl on time, but she was not walking at 15 months nor did she have teeth at this age. I became a little concerned, but her pediatrician said that some children just develop later that others. I was relieved when she started walking and teething at 16 months.

When she started talking, she got her words out of order and this continued into first grade. She also had fine motor and gross motor skill difficulties. Her preschool teacher asked me if she had these difficulties and suggested I enroll her in the county school system’s early childhood program for children with these problems. I did, and a language therapist and occupational therapist worked with her for a year before she entered kindergarten. She made some progress, but still had what seemed like minor developmental delays. She continued to be a very happy child despite her problems.

Four months before she turned three, we had a son. I stopped working when Todd was born so that I could stay home with the children.

When Adrienne entered first grade, she began having trouble staying organized and completing her work. Her teacher was concerned and I decided to have her tested at Georgetown University Hospital’s child development center. They performed a huge battery of tests and though her IQ was 128 according to these early tests, she had trouble completing manual tasks for them and they said her vocabulary was immature for her age. Again, I had a language therapist and an occupational therapist work with her. Meanwhile, her teacher insisted that she bring worksheets home that she had not finished so she could finish them at home. She would come home exhausted. We would play for a while and then we would get to work on her worksheets. She would tire easily, so we would take a break every ten minutes and I would swing her around and she would laugh with delight. We’d go outside for a while or do jumping jacks, etc. Finally, after more that an hour of this, she would finish her school work.

I decided that these assignments were essentially busy work so that the teacher could meet with reading groups while others completed these worksheets at their desks. There was not much educational value to the worksheets, so I made a conference with the teacher and asked her to shorten Adrienne’s workload on unessential work. She had the nerve to say that that would not be fair to the other children. I had taught thirteen years and had my master’s degree in reading and knew that the work she brought home was nothing but busy work. So I made an appointment to see her with the principal and he agreed with me. After this, Adrienne had more time to relax at home and work on her motor skills. After that I checked out teachers each year and requested those who I thought would work with her problems.

With understanding teachers, Adrienne made good academic progress in school and made good grades, but her social skills were not as developed as the other children’s and they made fun of her or simply left her out of their interactions. This broke my heart because she was such a sweet child. She developed a sensitivity to the feelings of others early on. In second grade, she came home and told me she had a new friend. I asked her about him and she said that she sat with him at lunch because no one else would sit with him. They became fast friends.

She did have a friend her age who lived across the street and they were good buddies until fifth grade when her friend started getting invited to sleepovers and Adrienne wasn’t. I involved Adrienne in Girl Scouts horseback riding lessons, art, dance, swimming, soccer, gymnastics, and even Little League cheerleading. She showed interest in all these things for a while, but lost interest in each of them except art and Girl Scouts. (She was not in all these activities at the same time. I kept her schedule simple so as not to overwhelm her. I just wanted her to be introduced to a variety of activities over a period of time so that she could see if she was interested in any of them.)

When I went back to teaching middle school, Adrienne was in fourth grade and Todd was in first. They later attended the same middle school at which I taught. When Adrienne entered sixth grade, she did make some friends and seemed to grow in self esteem. Her pediatrician suggested that she be placed on Cylert, a medication that helps students stay focused on only one tablet a day. Adrienne blossomed. She began making all A’s and was inducted into the National Junior Honor Society in seventh and eighth grades. Her self esteem continued to improve and she had a good middle school experience.

When she entered high school, though, she decided that she did not want to take the medication anymore. Her grades dropped, but still were acceptable. Her best friend moved away and she made some new friends. I had bought Adrienne cute, preppy clothes that I liked and she had liked them too until she entered tenth grade. Now she wanted to show her “individuality” with her hair and her clothes. She bought hair color and dyed her beautiful brown hair red and wore clothes from thrift shops. The kids she ran around with did the same. She and her friends were not into drugs or alcohol, but they sometimes looked like they were. She was never rude to anyone or said unkind things about anyone. She just accepted people as they were and lived by her own values without criticizing others.

She was small and was not strong enough to row, so she became a coxswain on the school crew team. She also enjoyed art and creative writing. She had taken art classes for several years and won awards in water color.

Beginning in middle school and continuing through high school, Adrienne would complain at times about pain in her legs. The doctor said it was just “growing pains.” She also began having migraines and we had a hard time finding something to help with these. A medicine would work for a while and then stop. Then we would try another one.

During high school, Adrienne complained of fatigue and had gastrointestinal problems. She did want to have a part time job and she was hired at Chucky Cheese. She would work even when she did not feel well. She was very dependable and did not complain about her health too much. She got a better job as a hostess at a fine restaurant and kept that job until she graduated from high school.

She decided that she was not ready to leave home and go to a four-year college, so she attended the local community college and worked part-time as a dental office receptionist. She loved nature and animals and decided to work during the summer at a state park, developing and leading children’s nature activities. She loved the job. After that summer, she left to attend Virginia Commonwealth University in Richmond to major in biology and minor in art. She seemed to be thriving there until she began to start feeling chronic fatigue, muscle and nerve pain, and severe migraines her second semester. She spent more time in bed and at the school clinic than she did in class by the end of the semester. She was almost twenty at the time. When she came home that summer, we began our journey into finding a diagnosis for her symptoms. She decided not to return to college in the fall because she was feeling worse that she had in the spring.

What a long, tedious, frustrating journey we began! Adrienne began having petit mal seizures and stroke-like symptoms in addition to her other problems. We went from doctor to doctor and some told her she just needed a good psychiatrist. She became depressed that some didn’t believe her and others could not find out the cause of her problems. She began to get swelling in her joints and a rheumatologist diagnosed lupus, but tests did not confirm lupus. So they just called it mixed-connective tissue disease, a combination of vague auto-immune symptoms. Medications prescribed for her helped little.

She decided to get on the internet and find out for herself what she had. After about a year of searching, she discovered a rare neuromuscular disease called mitochondrial disease that included all of the symptoms she had been experiencing since infancy. In order to get an accurate diagnosis, a patient has to have a fresh muscle biopsy and have the tissue studied over several months’ time.

None of her doctors knew anything about this disease and would not order a muscle biopsy. She continued to explore doctors on the internet and contacted a geneticist at Johns Hopkins who had written an article about “mito.” He suggested she see a neuro-geneticist at Children’s Hospital in Washington, DC. She was wonderful and knowledgeable about mito. She agreed that Adrienne had the mito symptoms and sent her to Atlanta, one of five cities that have medical centers that do muscle biopsies and study the fresh tissue.

Five months after the biopsy and five years after looking for a diagnosis, we got the results. She did have a mitochondrial disease. Her cells were not making enough energy for her body to function properly. She knew there was no cure and that the disease was progressive and eventually fatal, but she was just relieved to have a diagnosis. She knew that people would finally know she had not been lying about symptoms to get sympathy as some doctors had suggested. Children who show serious symptoms early in life usually do not live into their teens. Because Adrienne was an adult when she began having more serious problems, we all hoped that she would survive at least into her forties as some articles suggested.

Adrienne got in touch with the United Mitochondrial Foundation in Pittsburgh and got more information from them. She also joined chat groups of people who had mito. She became good friends with many of these people. She and I attended national conferences in Pittsburgh, Atlanta, and Cleveland. There were specialists in Boston who were treating people with mitochondrial disease. We began going there twice a year for check-ups and vitamin, mineral, enzyme, and amino acid therapies that did help restore some energy. She and some girls with mito around her age made appointments during the same week so that they could get together by making reservations at the same hotel. She loved getting together with these girls, and they supported each other through hospitalizations and hard times.

She learned as much as she could about mito so that she could educate the local doctors she saw. And educate she did. Doctors were amazed at her knowledge of medical terms and her disease and they checked websites she gave them to learn more about it.

Adrienne joined other chat groups for people with serious illnesses and encouraged them. Adrienne did not feel sorry for herself. She did not complain or ask, “Why me?” She endured her illness with courage and grace. As the years passed, she became weaker and her bladder, colon, lungs, and eventually her heart began to fail. She suffered extreme pain and had to take dilaudid, a strong narcotic, to try to control the pain. Yet, she kept her sense of humor, her courage, her compassion for others, and her faith throughout it all. She was poked, prodded, tested, catherized, and had every imaginable painful treatment you can think of. She had to have a port inserted in her chest to get IV medications at home because her digestive system stopped absorbing medications. Yet, she kept her faith, her courage, and her sweetness.

Many of her high school and college friends drifted away during all illness started progressing more rapidly because she felt it was not fair to him to expect him to not find this time, and I am sure that hurt her, but she didn’t complain. A few true friends and her former boyfriend remained loyal. She had broken up with her boyfriend when her happiness with somebody else. He did, however, continue to support her, call her, and visit her when she would allow him to.

My husband finally accepted that Adrienne was seriously ill. He, like many doctors, had initially doubted the severity of her illness. He thought she went to too many doctors, and that she was somewhat of a hypochondriac during high school and college and even when she had to quit college and come home. He was not much help until he could see that her health was really declining. Then he became a doting dad. I had retired in June of 2002 to take care of her and be able to take her to her appointments.

I was short with her some of the time because I became so tired and weary. I spent many nights in emergency rooms and hospital rooms. At home I had to get up many times during the night when she was having a bad night. I had little help. My husband and son were working and most of the care-giving was my job. All our family members live in South Carolina and work. They could not really help. My friends would visit, but she wanted me there with her. I regret the times I became short with her and complained about how tired I was. She once said, “I’m sorry I’m such a burden.” That broke my heart.