“I am very fortunate to know this sweet girl of mine, she is loving, cheerful and a bright little girl”
Natalia was born in April of 2016, it was a rocky pregnancy like any other for her mama and all tests always came out normal with no abnormalities. However after almost loosing her in birth soon after being born Natalia seemed to get sick very easily and very often no matter how cautious, it seemed as if she had a low immune system so she had constant visits to the doctor. The first time the parents brought it up to the pediatrician (June 2017) it was said that it’s very common for infants with older siblings to get sick often, after that in July of 2017 Natalia started having puffy eyes and the pediatrician sent her to see an eye specialist who said it had nothing to do with her eyes and then finally at the end of July due to excessive weight gain her parents demanded lab work to be done and unfortunately got the heart breaking news that she had a rare kidney disease known as Nephrotic Syndrome that has no cure. At first it was believed to be minimal change disease which is more temporary but after a biopsy it was confirmed to be FSGS (Focal Segmental Glomerulosclerosis) which was also the cause of steroid resistant’s. Meaning she wasn’t responding to treatment, as well as being the second leading cause of kidney failure in children. Some of these symptoms of FSGS that Natalia entailed are: Protein deficiency due to leaking in the urine, swelling also known as Edema, a high blood pressure, low immunity and a strict diet containing only 1000g sodium, 600 of phosphorus and 2000 potassium along with a 300ML liquid restriction per day (including medication liquids). This disease only occurs to 3-4 children out of One Hundred,Thousand. Natalia has gone through 3 blood transfusions so far due to low hemoglobin, a central line procedure, an HD catheter surgery and just recently another surgery adding on the GTube and PD catheter hoping to transition her to home care since she has been hospitalized with not one day out of the hospital since August till hopefully the first week of December (3 Months & some) and everyday since October till now so for a little over a month now she has been on Dialysis. She was placed on emergency dialysis since October so dialysis can work as her kidneys, but it also brings a lot of downside effects. As this disease progresses it has taken her to End Stage Renal Failure disease (ESRD) stage 5 meaning next step is transplant. Meanwhile as soon as she is discharged and healed from surgery she will be doing dialysis from home 7 days a week for about 10-12 hours a day. Mom had to stop working due to not leaving her daughter’s side through all this, while dad fights to get work hours in and still try to be flexible enough to give some sort of normality while being with their oldest daughter, Natalia’s older sister. So now the family is facing many changes and of course many expenses and responsibilities that cannot be fully met due to this hopefully temporary situation, especially knowing that a kidney transplant is to come in Natalia’s near future. Since she is on the waiting lists its just waiting for that call!
I made this page with the hopes of Natalia’s story getting out there and touching people’s hearts as she has done to ours. Natalia is my niece as well as my God Daughter and I took it upon myself to seek help for our family. Any amount of donation is appreciated and if you are unable to donate please atleast share this post. This gofund me would remain open even after reaching the goal until there is better understanding of the total costs and we would keep you updated on a regular basis.
Please learn more about FSGS at https://nephcure.org/ and help spread awareness.
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