Our lives were blessed with the arrival of our second child in March of 1997.
At birth, Bradley was a healthy baby boy. His first year seemed normal and
he reached his developmental milestones at appropriate ages.
However, looking back on his early years, I saw things after the diagnosis
that I had not realized before. I remembered that he was a cautious and slow walker, while other one year olds walked quickly, often running. Bradley also had difficulty walking uphill, while his peers could run up the same hill without hesitation. We thought that with confidence, he would get faster and more proficient at walking and running.
After Bradley turned 2, we noticed he was clumsy and fell more frequently
than others his age. I thought this was related to his frequent ear infections,
which may have affected his balance. But after Bradley’s third birthday, we
realized he was not getting better. He seemed to be stumbling and falling
more often. His gait, while running, seemed awkward and waddled. Others
began to comment about the possibility of something being wrong. We
became concerned enough to seek medical advice.
Bradley’s Pre-Kindergarten physical was scheduled in August of 2000. At this
visit, I voiced my concerns but the doctor reassured me that he would grow
out of this awkward stage. I was unable to accept this reassurance. I knew
something was wrong.
I decided to take him to a chiropractor who told me his spine was out of
alignment. He wanted to do spinal adjustments but my husband and I were
uncomfortable about chiropractic treatment.
We decided to get a second opinion from a reputable pediatrician. At the time, she did not see any significant problems. She told me she would follow up with him in 6 months and refer him to physical therapy, if I was still concerned. I didn't want to wait 6 months, but I did feel like an overly worried mother. I was ready to give up.
My husband said we could not stop there. He knew a doctor personally and
asked him to check on Bradley. He took x-rays in his office and told me the
x-rays were perfect. However, he agreed that his gait was very waddled with
running. He pondered on whether to send him to an orthopedic doctor or to a physical therapist. He decided to send him to physical therapy for gait training.
The physical therapist told me he had muscle weakness on the first visit. The
thought of muscular dystrophy did not enter my mind. I just felt positive that she was going to work with him and strengthen his muscles. Then everything would be alright.
The next day, I decided to call the chiropractor and let him know that I had
decided to have him treated with physical therapy. When I mentioned the
muscle weakness, he told me he had noticed Bradley's large calves and
wondered if he could have muscular dystrophy. I immediately thought it was
impossible, because there was no history of muscular dystrophy in our
But later that afternoon, I decided to look muscular dystrophy up in my
pediatric assessment book from nursing school. I first noticed a picture of a
boy using the Gower maneuver--getting on all fours and pushing up with a
hand resting on one knee to stand.
I remembered back to the day we briefly discussed muscular dystrophy in
nursing class. I was reminded even then that I had noticed Bradley getting up in the same way. As nursing students, many of us were guilty of thinking we or someone close to us had everything we studied. So I quickly dismissed it from my mind and decided I was only imagining that I had seen Bradley get up from the floor in that way.
Now here I was less than 2 years later, realizing my thoughts were correct back then. Bradley was still getting up from the floor in this same manner. The book didn't have much information but it did mention that it was genetic. Again, I was in denial because we had no family history.
That same weekend before the second physical therapy session, I was at my
parents' home. I was talking to my mother, who is also a nurse, about Bradley. l told her what the chiropractor had said about his large calves and the possibility of muscular dystrophy. I also told her that the physical therapist said he had muscle weakness. She suggested that I look it up online. At that time, I didn't have the internet at home.
I searched the internet for information on muscular dystrophy. When I read
about Duchenne Muscular Dystrophy (DMD), I felt as if I was reading about
my son. He had all of the symptoms; difficulty climbing stairs, a waddled gait, frequent falls, and difficulty rising from sitting. By this time, it was beginning to sink in. I had a very strong feeling that this was his diagnosis. I wanted to be wrong.
The next day, I took Bradley to his second physical therapy session and
discussed everything with the physical therapist. She had already had
suspicions. In fact, I later learned that she had worked with another boy
who was diagnosed with DMD, while she was treating him.
After physical therapy, I went straight to my husband's workplace to meet
him for lunch. After I told him that the physical therapist suspected the same
thing, he called the doctor that he knew personally, the doctor who had
referred him to physical therapy. He told Tom it was a rare disease, but he
needed to be tested.
Bradley was referred to the neuromuscular clinic at St. Louis Children’s Hospital. We had to wait 6 weeks to have him seen by a neurologist. Our appointment was on November 14, 2000. It was a day we would never forget; a day that would change the rest of our lives.
Bradley was evaluated by a neurologist. As we left that day, he gave us an
order for a CPK blood test and sent us to the hospital lab. He explained that
CPK was the abbreviation for creatinine kinase, a muscle enzyme that leaks
into the blood stream when muscle damage is taking place. He said an
elevation would indicate muscular dystrophy.
He told us he would call us within the next week but we received a call one
hour after getting home from St. Louis. His CPK level was 14,000, a strong
indication of Duchenne Muscular Dystrophy. We were devastated by the news and I was in tears while on the phone.
That night, I tried to sleep but couldn't. I tried to pray, but could not find the words. I knew God was there with me, even thought I layed there in silence for awhile. I finally began asking, "Why God? What have I done to cause this? Why should my son have to suffer?" I wanted it to be me, instead of him. As I cried, I felt as if God was holding me close in his arms. He didn't expect me to know what to pray. He understood my devastation and he comforted me.
In time, I realized that God had chosen me and my husband to be Bradley's parents. God did not cause Bradley's disease but he knew what was to come long before he was he was even born or conceived. I also realized that this had not happened to say that I was a bad person. I knew God had a purpose for Bradley's life and a purpose in making my husband and I a part of his life. I knew God was in control and would get us through the hardships ahead.
The next step was having a gene test to confirm the diagnosis. We had to
wait 4 weeks only to find out the results of the gene test were inconclusive.
I hoped the diagnosis was a mistake but the neurologist was still almost
certain that he did have DMD. He told me that Bradley would need a muscle
biopsy to confirm the diagnosis. He scheduled the muscle biopsy for
January 19, 2001.
We received the muscle biopsy results only 10 days after the surgery.
I thought I was prepared for the worst. But when it was confirmed that
Bradley had DMD, it was like getting the diagnosis all over again. I broke
down and cried as the neurologist tried to comfort me. He spent more than
30 minutes talking to me on the phone that evening. Shortly after the phone
call, my husband came home. I met him at the door and burst into tears as I
explained to him that Bradley really did have DMD.
Not long after getting the diagnosis, I saw a friend in a local store and told
her about Bradley’s diagnosis. I began to cry, as I told her the news, in front
of my two children. I could not hold back the tears. After she left, my little girl, Stephanie said, “Mommy, I think I hurt Bradley’s legs.”
She thought she had been playing too rough with Bradley and had caused him to have muscular dystrophy. I could not believe she was blaming herself. I reassured her that it was not her fault. It was then that Bradley looked at me with a confused expression and said, “Mommy, are you crying about me?” I realized how much he knew.
I recognized how open I needed to be with my children about Bradley’s
disease. I wanted them both to be educated about the disease on a level
that they could handle and understand. On the way home from the store,
I explained to Stephanie that Bradley had been born with muscular dystrophy and there was nothing she could have done to cause it.
It has been ten years since Bradley’s diagnosis. For the most part, I have tried to be positive through the years. I try to think of the good things that have come out of Duchenne Muscular Dystrophy. I think of the people I have met, all the things that I have learned, and how I have come to understand others with disabilities.
I am thankful that things have not happened exactly as the neurologist
predicted. We were told Bradley would be completely dependent on a
wheelchair by the age of 12 years. He is going to be 15 in March and
continues to walk using the wheelchair only on occasion when there are
activities that require long distances.
I am thankful to all the people who have prayed for Bradley because I know
God has taken care of him. I know that God will continue to take care of him and carry us all through the difficulties ahead. Even if Bradley does stop
walking, it will not be the end of the world. I have faith that he will lead a
productive, quality life as many with disabilities have already done.
For the latest updates, please go to Bradley's Caringbridge Journal: www.caringbridge.org/visit/bradleyspages
Our Email Address: firstname.lastname@example.org
Our MDA Fundraising Page for Muscle Walk March 31st at West Park Mall in Cape Girardeau: http://www2.mda.org/site/TR/Walk/77-F2-696-CapeGirardeauDistrict?px=1009091&pg=personal&fr_id=1452