Kimberly (Kim)
is our third child. She has two older brothers, both of
whom are healthy. However, her mother's little brother died of
Cystinosis in 1954, before they knew what it was. She was diagnosed with
Cystinosis at 9 months. The doctors told us to take our little baby home to
die, but gave us a very slim hope with a new experimental drug that might
retard her disease. This medicine (Cysteamine) showed promise, but had severe
side effects, including death. We chose to fight for our daughter's life and
have never regretted it.
Kim had a very difficult time
with her Cysteamine, which only came in a liquid form that tasted and smelled
like sulfur. The Cysteamine caused Kim to have severe stomach problems, and she
was sick much of her early life. She usually vomited up her medicines, but kept
enough down to keep her alive. For several years, we had to be quite creative
in getting her to take the medicine that she hated so much. The medicine also
made her food taste terrible. To this day, she has a strong dislike for milk,
fruits, and vegetables, but has a strong craving for very salty
foods.
She spent a large
part of her early years in the hospital, at the doctor's office, and sick in
bed. We never knew when she would get sick, but it happened often. However,
there were many good days to go with the bad.
A great deal of her hospital stays was the result of complete
dehydration, and it was extremely difficult to put IVs into her tiny veins. Her
Cystinosis also seemed to make her somewhat lethargic most of the
time.
Kim started
Kindergarten at age 5, but was a bit behind her classmates because of delayed
speech clarity. They thought she'd need several years of therapy, but by the
next year she had matured quite a bit. She was also slower, academically, than
the other children. We held her back in 1st grade because of physical and
educational maturity. We (and she) have never regretted it. She believes that
if she'd been passed on, she'd have been behind the rest of her life and is
very thankful that we held her
back.
Kim was extremely
shy in school and around adults. She is still the same way today, having a
great fear of being in front of a crowd. However, around family and friends,
she is quite the lively button, usually the leader in doing ornery
things.
At
age 10, her kidneys failed. She went on peritoneal dialysis for 14 months. She
did quite well with it, but hated to be hooked up to that machine for 12 hours
every night. Of course, our family spent a lot of time in the bedroom. After
testing both parents, the doctors decided that her father was the best match
for a transplant. So, in April 1992, Kim got a new kidney and a whole bunch of
new medicines, with their associated side effects - the main one being the
puffiness from Prednizone. As time went by, the dosages decreased, and she
started have a more normal life. We were hoping for some growth after her
transplant, but it was slow in coming and very
little.
When Kim was in
Jr. High, we noticed she was having a very difficult time academically. She
worked extremely hard, but was lagging farther behind. Specialized testing
revealed that Kim had some learning disabilities. With more problems, this
determined young lady kept fighting. She had to take some special education
classes, which she hated because they were so boring. As difficult as things
got, she kept working and started improving.
Socially, Kim was a
normal teenager who did everything with her friends, with some physical
limitations of course. She loves to go shopping and buy new clothes and she
likes to tell us about all the "really cute" guys she meets. She also
maintained a part-time job, earning enough to buy her own car and pay her own
insurance; on top of her regular teen spending. But, she knew that the job
would end if the grades
suffered.
In November
1998, Kim began having symptoms similar to when her original kidneys failed.
After a biopsy, it was determined that the new kidney was failing. After a
prolonged illness, the doctors decided that her kidney needed to be removed and
she needed to go back on dialysis. After a week in the hospital, she started on
home dialysis, doing manual exchanges, which gives her a great deal more
freedom.
Because of
hospital time, Kim had to go to summer school to stay on schedule and graduate
with her class.
She really worked hard to keep up, and found herself excelling.
Since Kim spent so much of her life in hospitals, she had it in heart to become
a nurse and help other children. She always wanted to be like the nurses in the
children's ward at the hospital, playing nurse a great deal of the time. In
high school, career testing helped Kim decide to become a medical assistant,
with a possible future in nursing if everything gets better. She started
searching for a school and scholarships. She started school at the Omaha
College of Health Careers shortly before graduation, and has been going to
school ever since, expecting to graduate in February 2002.
Kim has been on
dialysis for 2 ½ years, and is still waiting for a transplant. She
continues to live each day to the fullest, enjoying every minute of it, while
still having some bad days. We firmly believe she will be a great medical
assistant, and one day may still become a nurse. With her experience, we are
sure she will be of great help to many children (and their parents) as they
struggle with illnesses. Knowing what the patient is going through is a gift
that healthy people can't understand. And having an understanding ear is
sometimes more important than having all the
answers.
Kim
is 4'5" and 85 pounds. Although she is very conscious of her size and has to
endure a great deal of ridicule because of it, she keeps her head held high
maintains a great attitude. She gets stopped by the police quite often while
driving because of her size and young looks. We're sure many Cystinosis
patients know that
feeling!
We are very
thankful for all the doctors, research people, parents, volunteers,
pharmaceutical companies, and all the children who work together as a team,
searching for a cure for this devastating disease. We are extremely proud of
Kimberly for all of her accomplishments, and for overcoming so many obstacles
in her way. We are also extremely grateful for the scholarships she's gotten,
especially the LYNN POTTS SCHOLARSHIP. To receive a scholarship from
those who know her difficulties, personally, makes her award so much more
special. We know that Kim will use this gift to bless many more children in the
future, as they struggle with their
illnesses.
Most of all,
we are thankful for our heavenly Father, who holds us all in His loving arms.
We believe he sustains Kim, strengthens her, and gives her the courage to
continue fighting through all her difficulties.
Thank You,
The Riedel Family