Kimberly's Story - 2001

KIMBERLY RIEDEL
By The Riedel Family (2001)

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 (Cystagon) 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 Cystagon, which only came in a liquid form that tasted and smelled like sulfur. The Cystagon 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 to 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 gave 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