Michael
Anderson Anderson 1
Sister
Steadman
Writing
150
October
24, 2015
Is Disease All Bad?
The Positive Impact Disease Has on the
Family
On December 28th, 1961 my
uncle Chuck Anderson was born at Utah Valley Hospital. Chuck was born with what
appeared to be “popped blisters” on his knee, his hand, and his foot. The
doctors thought these ailments were merely infected birthmarks so they washed
him and dressed him as they would any other baby. By morning, his body was
covered in water and blood blisters. Franticly the doctors searched for the
cause of the problem because they had never encountered anything like it. After
24 hours of waiting in a panic, my grandparents finally received the doctors’
diagnosis. Chuck had a severe skin disease called Epidermolysis Bullosa. Although
they didn’t know at the time, this news would drastically change the course of
their lives and give rise to countless trials and tribulations.
Background
Epidermolyisis Bullosa (EB) is a
very rare genetic connective tissue disorder that affects one child out of
every 20,000 births, which means about 200 children are born with EB every
year. (What is EB 1) It is characterized by fragile skin along with subsequent
blistering, erosions, and scarring. (Lin 1)
Both my uncle Chuck and my aunt Christine, born 16 years later, suffered
from the most severe form of this disease. EB is caused by a genetic defect
where the protein that connects the top two layers of skin is
Anderson
2
missing.
This is like having no “glue” to hold the skin together, which results in the
skin tearing or blistering with the slightest friction. (Dures et al. 2) When
Chuck and Christine were babies, their skin was so fragile that lifting them
under their arms completely removed the skin. Pants rubbing on knees and the
pressure of shoes caused blisters and sores. (Anderson 1) Try to imagine a person with wounds very similar to burns covering
most of his or her body. However, unlike burns, these wounds never go away.
Bathing was the most challenging part of their lives. Not only were the baths
excruciating, but also they were long, lasting two to three hours. The bandages
around their wounds had to be soaked off because they often stuck to the sores.
Clorox water was then used to cleanse the wounds. Because towels caused too
much friction, my grandma had to use a blow dryer to dry their skin. After this
already exhausting process, she would then cover their wounds with antibiotics
and bandages. The final step was a soft gauze wrap that covered their bodies
almost head to toe. Another awful aspect of EB is the result of scarring.
Children with EB have to have strict diets that consist of liquids and soft
foods; otherwise scarring will occur in the mouth and esophagus. Scarring also
causes the fingers and toes to fuse, making the hands like closed fists, which
severely limits function. (EB Kids
1) There may be no other disease that brings more unrelenting suffering than
that of Epidermolysis Bullosa. But in spite of the suffering that Chuck and
Christine endured, they were amazing in their ability to find meaning and joy
in their lives. Because of their incredible bravery, my aunt and uncle impacted
my family and others in three significant ways: (1) they helped my grandparents
see the good in
Anderson 3
mankind;
(2) their courage strengthened and inspired my family and all who knew them;
and (3) they inspired my grandmother to found the first EB research foundation.
Disease Reveals the Good in Mankind
The time and money required to raise
and care for Chuck and Christine was immense. My grandpa was originally considering
becoming a professor, but had to abandon that option and put himself through
law school because he knew they were going to need more money to raise Chuck.
With my grandpa going through school and later working a demanding schedule, my
grandma had to do most of the caretaking on her own. Raising two kids with EB
was overwhelming and exhausting enough, but she had my dad and two other
adopted children to care for as well.
Growing up was hard for Chuck and
Christine because they couldn’t do the things healthy kids did for fun, such as
riding bikes and playing sports. However, this didn’t stop them, especially Chuck.
Even as a young boy, Chuck always showed astounding confidence. He was never
afraid to introduce himself and talk to people. Because of this confidence,
along with his debilitating disease, people were drawn to him and wanted to
help. My grandparents witnessed countless kindnesses and accommodations on Chuck’s
behalf that made his life more enjoyable. The staff at the Oakland Airport let
him sit in the control tower and watch planes take off. Owners of fancy San Francisco
restaurants welcomed his frequent visits and insisted on paying for his meals.
A prominent radio talk show host brought Chuck on as a regular Friday co-host
and often took him to dinner before or after the shows. And the Oakland Police
Department even allowed him to ride in the police helicopter. Not only did
people do these amazing things for Chuck, but more
Anderson 4
importantly,
they befriended him and showed him love. The many gestures of kindness and
compassion toward Chuck strengthened my grandparents at times when they needed
it most, and they reinforced my grandparents’ belief that small acts of service
can bless lives tremendously. Because of this, my grandmother began consciously
seeking to help people in little ways. By looking beyond her own needs and
problems, she found healing. In an interview with my grandmother she said, “I
look back now and wonder why it took me so long to plug into the message of the
gospel - - that we will find ourselves serving others.” Service was a therapy
that caused the grief in my grandmother’s life to greatly diminish. Her
discovery of this gospel truth helped to instill important virtues such as
kindness, compassion and empathy in my own family. I see them expressed by my
mom and dad every day, and I consciously try to incorporate them in my own life.
I also recognize, however, I am nowhere near where I can and should be. I have
to remind myself every day to pay more attention to the needs of others and to
find ways to brighten their lives – as so many people did for Chuck and
Christine. When I approach life in this way, it not only benefits those I
serve, but also brings me greater personal peace and happiness.
Courage Inspires and Strengthens the Spirit
Even at age 12, Christine showed
incredible strength and courage. When going to school, she would wince in pain
while putting her backpack on over her shoulders. Her backpack caused awful
sores and often tore skin, but Christine put on a brave face. My grandmother
would beg Christine to let her carry it, but she refused because she wanted to
fit in and feel like everyone else. Another example of Christine’s bravery was
on her
Anderson 5
deathbed
at age 14. My mother, my older sister (five years old at the time) and my older
brother (one year old) went to visit her in the hospital. In excruciating pain,
she removed the oxygen mask from her face before they got there so she wouldn’t
scare my young siblings. Despite all of her suffering, she was more worried
about frightening my brother and sister than she was about her own life.
Chuck’s and Christine’s examples of courage,
perseverance, and steadfastness have provided me and the rest of my family with
important perspective. In times of adversity or disappointments, we are
reminded of how beautifully Chuck and Christine handled much greater struggles.
Through it all, they were able to maintain a positive outlook and find joy and
meaning in their lives. When we think of how much pain and suffering they
endured, it makes the problems we face seem trivial. When I was a young boy I
would cry and whine if I didn’t get to go to a friend’s house. When Christine
and Chuck were little, they went to school with open wounds covering 75% of
their bodies. I am thankful I have the perspective now to realize how
unimportant the problems I have really are. Not only does it help me get
through stressful times, but it increases my desire to help those who are
facing far greater obstacles to overcome.
Another way Chuck and Christine strengthened
my family was through their unwavering faith in God. Through all of the
relentless pain they faced, it would have been easy for them to blame God. They
never did. They always knew that God
loved them, that he was looking after them, and that they would someday return
to him – healthy and pain-free. Their faith strengthened and comforted those
around them. My grandmother said in an interview for a Mormon women’s website,
“I think life with
Anderson
6
Christine
and Chuck was a spiritual journey for all our family. Not one of us could have
accepted the sadness of their lives had we not known there was a life beyond
mortality where they would enjoy bodies free from pain.” The testimony of Chuck
and Christine increased their own desire to fight, and it allowed my
grandparents to feel joy that would have otherwise been impossible to feel. Because
of the courage they showed during their lifetime, Chuck and Christine helped
cement the gospel in my family today. I am sure that my family would not be as close,
happy or successful without the influence of the gospel.
The Foundation
When Chuck and Christine were young,
the DEBRA Foundation was the only organization directing its efforts to helping
EB families. It was primarily a family-support group with very little funds
being directed towards research. Although my grandparents admired the efforts
of DEBRA, they wanted to completely eliminate the terrible suffering of EB
patients. They believed the only way to do that was to start medical research
foundation dedicated to finding a cure.
My grandparents had always taken
Chuck and Christine to St. Louis for treatment with Dr. Eugene Bauer, the only
researcher of EB in the nation. In 1988, he became the Dean of the Department
of Dermatology at Stanford University. (Stanford Dermatology) Dr. Bauer also
had a great desire to find a cure for EB and had been focusing on research for
a number of years before coming to Stanford. With his new leadership position
at Stanford, he decided to attack the disease with a vengeance. He asked my
grandparents to partner with him in starting a foundation to raise research
funds. In 1991, they established
Anderson 7
the
EB Medical Research Foundation, an organization directed solely to the research
of Epidermolysis Bullosa. At that time, there were three doctors interested in
EB research at Stanford. Because of the success of my grandparent’s foundation,
there are now more than 65 people at Stanford working on EB research. The
foundation has raised more than 15 million dollars for research. After 20 years
of commitment, patience and the hard work of the Stanford scientists, they have
received FDA approval for human trials for a gene-therapy treatment, and the
first five patients have been successfully treated. Although only small patches of skin have been
treated successfully, and there is still a lot to discover before treating the
full body, this is a huge step towards a cure.
My grandparents’ foundation has not
only helped them feel better through service, but it has provided hope for
families that are suffering or have suffered from EB. Hope gives reason for
people to keep on fighting.
Conclusion
My uncle Chuck passed away from skin
cancer in 1988, at the age of 27. Christine died five years later of heart
failure at 14. Even though they were only on this earth for a short time, they managed
to leave a lasting and powerful impression on all of us. My family has been,
and will continue to be, inspired by their faith and courage, and by the many
people who befriended and served them with Christ-like love. Despite the incredible challenges that my
grandparents faced in caring for Chuck and Christine, this experience helped
them to more clearly see the good in the world and the healing power
of
service, compassion and empathy. These
principles have been passed down to me and my family and they influence our
daily actions.
Anderson 8
Chuck and Christine also impacted my
family by showing courage in the face of ceaseless suffering. They have given
my family gratitude in health, as well as perspective on the important things
in life. My aunt and uncle have embodied faith to me, and have strengthened my
testimony. I have learned that my daily troubles are miniscule and that with
God’s help I can be strengthened.
Chuck and Christine were the reason my
grandparents created the EB Medical Research Foundation. This foundation has
been extremely successful and gives hope not only to our family, but to everyone
affected by this disease.
I am so thankful for my Uncle Chuck and
Aunt Christine. In their short lives they have made more of an impact than I
could ever hope to make. I am amazed and inspired by their faith and their
courage, and I will always try to maintain those virtues in my own life.
No comments:
Post a Comment