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
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
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
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.
Adrienne had two long hospital stays in November, 2007. She had developed pulmonary
hypertension in 2005 and her lungs continued to fail. She was on oxygen at home. Her heart
began to swell during her hospitalizations, but she was sent home with visiting nurses and
therapists coming to our home.
On December 1, 2007, Adrienne was a little short of breath, but this was not unusual. She was
always taken to the emergency room if she felt seriously short of breath. That evening, she and I
watched a comedy on TV and laughed together. She was in good spirits and we joked around
with each other. It started getting late and I was tired so I told her that I was going to bed. We
said goodnight and I went to bed in my room.
My husband, an early riser, got up at 5:50am the next morning and checked on her. She was
sitting up in bed. He asked her if she wanted him to bring her some breakfast. She replied that
she wanted to wait because she was still a little out of breath. She didn’t seem to be in any stress
and showed no concern.
At 6:20, she buzzed me on our intercom system and asked if I could come into her room. I got
up and went in there. She told me that she was feeling dizzy and was short of breath. I called for
her dad, but he could not hear me because he was in the basement cleaning cat litter. I ran to the
top of the stairs and yelled again. He finally heard me and came running up the stairs. When I
got back to Adrienne, she was struggling for breath and her eyes were unfocused. Suddenly, she
stopped breathing. Her dad had called 911 and I started CPR, but I was so upset that I was not
counting correctly. My husband took over as I talked to the 911 operator. We could not get her
breathing again. When the EMTs came they couldn’t either. They took her to the hospital.
My husband and I dressed quickly and went to the hospital. I knew she was dead, but on the
way there a sense of peace washed over me and I heard Adrienne softly say, “Don’t worry,
Mom. I’m OK.” I called a close friend on our way to the hospital and she called other friends.
They all came to the hospital. Our 25-year-old son was not answering his phone. It was turned
off. I kept trying to reach him and left a message for him to come to the hospital when he got the
As I walked into the emergency room, I heard the speaker announcing, “Code Blue in the
Emergency Room.” I told the woman at the desk that it was my daughter they were referring to.
She took us to a private room to wait. After a while the ER doctor came in, and I knew before
he said anything that he hadn’t been able to revive her. He gave us his condolences and asked if
we would like to see her. My husband and I spent about an hour with her, talking to her, kissing
her, and telling her how much we loved her. I sat their crying and holding her hand. Her dad
asked the nurse if we could cut some of her hair so that we would have a part of her. She
brought scissors and he and I cut tresses from her hair. I didn’t want to leave her because I
knew I’d never see her again on this earth. She had requested that her body be donated for
medical research and made me promise that I would follow her wishes. Of course, I did, but I
didn’t want to think about her body being cut up and studied at a medical research facility or
We finally left her there because her body was to be picked up by the state anatomical
department. We went to the private room where we had waited when we had gotten there. Four
of my dearest friends were there crying and rushed to console us. I was in a state of shock and
numbness. I just couldn’t believe that she was gone. I calmly called my son again and told him
that we were leaving the hospital and for him to come home when he got the message. I knew
that he would think that Adrienne had been discharged and we had all come home.
We got home and people starting arriving. I had called my sisters in SC and they were flying
in that evening. My son arrived home after receiving my last message and looked confused
about all the cars around. After he walked in, I led him to the kitchen where we could be alone,
and my husband and I tearfully told him that his sister was dead. He almost collapsed to the
floor and kept saying, “No, Mom, no. Oh, God. No.” It broke my heart. He and Adrienne had
gotten very close the last year. He would watch movies with her and go out to get milkshakes
when she wanted them. He carried her up and down the stairs. They spent a lot of time together.
He told her he loved her everyday and tried to do things that made her happy. He knew she was
going to die eventually, but none of us expected it this soon.
I was in control enough to make arrangements for her memorial service and write the obituary.
My husband went back to the hospital to sign the release for her body to be taken for research.
My sisters arrived and stayed a week. Other family members arrived later before the memorial
service. We had so many visitors and lots of food. We were taken care of that week.
Adrienne’s memorial service was a true celebration of her life. I spoke about her kindness,
compassion, and selflessness. Two friends gave eulogies about how caring Adrienne was. One
of the girls with mitochondrial disease who she met online sent a eulogy because she was not
well enough to attend. She and Adrienne had become close attending United Mitochondrial
Foundation conferences and meeting for doctor’s appointments in Boston. They spoke on the
phone several times a week sharing news and encouraging one another. She spoke so lovingly of
Adrienne – what an inspiration she had been to so many people. The minister said very loving
things about Adrienne and her faith. I was on a high after the service. I felt that Adrienne had
been lovingly memorialized. Many people said after the service that it was the most beautiful
memorial service they had ever attended.
Days have been hard since her death. We received her ashes about ten weeks after her death
and plan to plant a memorial garden and scatter her ashes there as she requested.
She was such a beautiful and caring person. She was loving and forgiving. Though I grieve so
much for her and miss her, I know she is in perfect peace in the loving arms of God.