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This
is Allie's Story
 Allie is a smart, vivacious six year old. She was diagnosed shortly after turning five with Nephrotic Syndrome. Her doctor put her on prednisone to start. After little response to the prednisone, he increased her dose, which caused personality changes, weight gain and apparent self consciousness in my little girl.
In September of 2007, we ended up in the hospital due to high protein in her urine and extreme swelling of her body. She looked so uncomfortable. They ended up doing a kidney biopsy which revealed FSGS. It was news I was hoping to avoid, but we, as a family, were prepared.
I educated myself on this disease, did extensive reading, gathered all the info I could, to better understand what my precious Allie was going through and what was to come.
She has been on so many medications, including vasotec for high blood pressure, cytoxin, prednisone, cozaar for blood pressure. Her regime, as of today, consists of prednisone once a day (thankfully, she can have that low dose), prograf, cellcept, vasotec, norvasc, pepcid, and tums with calcium. She's been on prednisone for over a year, and has only had a trace of protein in her urine twice since the first visit to our nephrologist.
Allie is considered steroid resistant, although there is some response when she receives high doses of IV steroids for three days. When she retains fluid, we have to travel to the hospital over an hour and a half away. We are trying to make the best of it.
We are awaiting the results of a genetic test, which, I pray, will reveal a gene mutation. Her prognosis is much greater if that is the case.
Now, onto the fun facts. Allie is one of six. She has one older brother, Matt, who is nine, two older sisters, Angelina is eight, and Anna is seven, and two younger sisters, Alaina is five and Krista will soon be two. The children do not understand Allie's disease; they understand she will eventually need a transplant. When that will happen, we don't know, but we are as prepared as we can be.
The love we have as a family is amazing. It's very hard being away from my family when Allie goes into the hospital, but the children know that's where we have to be in order to keep her "healthy".
Allie is an amazing kid. She has such great faith, as do I, that God will take care of us, after all, He has through this whole ordeal. She plays, goes to school and does all the things the other children do...we just have to be careful that she doesn't get sick.
All of my kids are great! They all love Allie, and Allie loves them...of course they fight, but when it comes down to it, each one said they would give her one of their kidneys. Now that's selflessness!
Barbara
Mother of Allie
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