-You bring your eldest to the doctor to treat allergies only to find out the symptoms are from her kidneys malfunctioning and she is diagnosed with Nephrotic Syndrome, a rare kidney disease.

-As you are just learning about Nephrotic Syndrome, in general, you find out there are several types: if “Genetic”,your other child might be susceptible as well but “more treatable”. If “non-genetic”, your other child is in the clear, but your diagnosed child will have a tougher time. Which outcome do you even hope for?

cause her body pain within hours and will speed up her kidney failure.

-Your child spends most of the day on the couch in pain and too tired and uncomfortable to hold or play with.

-There are more tests and more waiting for results.

-Your toddler misses you while you are at the hospital (again) with your sick child, but you can’t be in two places at once

Glomerulosclerosis (FSGS), a serious condition that can lead to kidney failure, for

which the only treatment options are dialysis or kidney transplant.

-Your child must take a special pill to eat a “treat” and even that is limited and must

be watched carefully.

-You try to keep the inevitable from happening by tracking and enforcing a strict

diet and watching each mg of sodium, potassium, water intake, sugar, etc. because

even healthy foods such as certain fruits can trigger edema, high or low blood

administer to her or she will have to be admitted back into the hospital.

-You promise your family you won’t work and finally enjoy a break on a 3-day weekend with

them only to have an emergency trip to the hospital.

-Celebrating even the smallest smiles and multiple days at home because they are rare at

times.

-Your spouse and youngest regularly make 2-hour round trips to the hospital and meet outside just to spend some time together only to be separated again with 2 at the hospital and 2 at home.

-At age 5, your child has surgery for anesthesia for a kidney biopsy

-A week after her 7th birthday, your child has surgery to insert aQperitoneal dialysis (PD) catheter so she may receive dialysis daily.

-Labs are lost, tests must be re-done, you wait.

-And wait.

-You finally get approved to donate and now worry about the upcoming double surgeries.

-Your greatest wish is that your family can be happy and healthy together.

 

This is only a small glipmse into the pain, stress and turmoil a parent experiences when their child has a chronic organ disease.  It’s almost impossible to describe the toll it takes on one menally, physically or emotionally.  That’s why we have created this support page for Eliana and her family.  We know that if the financial burden can be lifted from this family at least they will have some small allevaition from all of this suffering.  Please share, like and donate to show your support for this loving family and special little girl.