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SAVING KIDNEYS. SAVING LIVES.
DAISY’S STORY
The NephCure Foundation is currently the only organization dedicated to We decided that we would like to share our story for a couple of support research seeking the cause reasons. One is so other parents of children with FSGS could see of two debilitating kidney diseases, they are not alone. Another is to get people aware of what this disease does to the patient as well as the family.
Segmental Glomerulosclerosis (FSGS), improve treatment and find a cure. Our 5 year old daughter, Daisy, was waking up with swollen eyes in June 2003. We took her to her pediatrician who diagnosed her with Nephrotic Syndrome. He sent us to see a Nephrologist the next day. We began a six week therapy treatment of Prelone, doctor visits every week, as well as blood and urine tests. After about one week she responded, but this did not last long. Her protein level started rising into the 2000 range and she was having blood in her urine. After five weeks of trying to see if she would respond, her doctor decided it was best to do a biopsy. On Aug. 6, 2003 Daisy had her biopsy. This was a stressful and emotional day for all of us. It was very hard to walk out of the room when they put her to sleep. It took about two weeks until we got the results. My husband could not get out of work, so my boss took me. I was very anxious to find out what the results were. The doctor said to me, “You may not want to hear what I have to say, but your daughter has FSGS.” My heart sunk and I remember Things from this point got worse for us. We were in a terrible financial situation and were forced to sell our house. Daisy came down with pneumonia. We started two new medications, Neoral and Malenate, along with the Prelone three times a day. Within the first month of therapy she went into remission for five months. In April 2004 she relapsed for about two weeks and in late June she relapsed again. She is now having trouble fighting this one back to remission. The doctor tells me he can’t increase the Neoral anymore and if we do try to increase the Prelone, there is a good chance it just won’t work again. He tells us we should count our blessings that her kidneys are still functioning. We try so hard to be strong for her, but there are times where it’s difficult not to break down. Daisy is having side effects, such as increased hair growth, mood swings, lack of appetite and the worst is joint pains in her ankles that are so bad they make her cry. We are very thankful that we have two great doctors. We are also grateful that my boss is very understanding when I can’t make it in to work. But we are grateful we still have our only child (continued)
I asked my daughter a few questions to get her to share her thoughts on how she feels about her kidney disease. This is what she had to say: “I’m used to the blood test. The doctor makes me happy that he is helping me. My medicines are yucky! I love salty food and want more than anything a Lunchable, but I know I can’t. I worry that my kidneys won’t work and I’ll be in the hospital for a very long time. I’m scared of chicken pox. And never want a big needle in my leg like last time I got sick.” If you would like to get in contact with Christina and Daisy, please emailand we will direct your email The NephCure Foundation is currently the only organization dedicated to support research seeking the cause of two debilitating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS),improve treatment and find a cure. http://www.nephcure.org 1.866 NephCure 15 Waterloo Ave Berwyn, PA 19312

Source: http://w.nephcure.org/sites/default/files/neph_004_patientstories_daisy1.pdf