Life with FSGS

We were blessed with our beautiful healthy baby girl on February 28th 2011. In December 2012 her feet and ankles begin to swell. After a trip to the emergency room she was diagnosed with minimal change disease, a type of kidney disease children typically outgrow by adulthood. However, after months of steroid therapy, she begin to loose large amounts of protein in her urine and underwent a kidney biopsy. It was then discovered that she has Focal Segmental Glomerulosclerosis (FSGS). FSGS is a condition in which an individual becomes dependent on dialysis or a kidney transplant, both which are imperfect solutions. The overall prevalence in the United States is estimated to be 70,000 individuals, this includes children and adults. Finding new treatments for FSGS is generally recognized as one of the great challenges in medicine.


Alexis is now 2 years old. She has frequent laboratory tests completed to monitor her level of kidney function, and protein/albumin levels. She is taking 9 medications twice a day. Often times she is fatigued, suffering from the side effects from the medications. Until recently she didn’t want to play with her toys, or want to play with others. She was responding to medication, but due to recently catching pneumonia and gastrointestinal issues she has stopped responding to medications. She was admitted to Kaiser Oakland Children’s hospital on November 27th. Since being in the hospital she has suffered high blood pressure, constant vomiting, and kidney problems. She is receiving her medications through a picc line and on a feeding tube. While being at Kaiser Oakland hospital she has had many complications. Due to the mistake of her being given too much blood during a transfusion she was transferred to UCSF. She has now started dialysis and we are hopeful this will be the solution. Other than having kidney problems Alexis also has other complications. She has had vomiting since August 2013 and doctors still don't know why this is happening. She rarley eats because her tummy is always hurting.

Because of the constant care Alexis needs mom had to quit her job to take care of Alexis and Dad is working hard at a job an hour away from home. The hospital is 2 and a half hours away from our home town so it is hard for family to go and see Alexis as much as we want too. The money that we would raise for Alexis would be for food, transportation, and bills. Anything would help! Doctors do not know when she will be able to come home.
 
Alexis continues to fight each day, we are so proud of her and amazed by the amount of strength and courage she has. She truly is our hero.
  • Linda Rea 
    • $250 
    • 88 mos
  • Dave and Cindy Bertocchini 
    • $250 
    • 88 mos
  • Roxann Eddigton 
    • $40 
    • 88 mos
  • Anonymous 
    • $20 
    • 88 mos
  • Mary Blansitt 
    • $20 
    • 88 mos
See all

Organizer

Marissa Tovar 
Organizer
Stockton, CA
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