Emmie E.

Child, Congenital Nephrotic Syndrome

We had previously sent in Emerson’s story over a year ago and thought it may be time for an update. She was diagnosed with Congenital Nephrotic Syndrome at 8 weeks old, and spent most of her first year in the hospital due to numerous infections, surgeries and procedures. She had both kidneys removed at 5 months old and has been on dialysis since January 22, 2016. She currently needs around two kilos before she is eligible for a transplant.

But none of this has crushed her spirit. She is such a funny, goofy little girl. And although she’s about to be 2, she is the size of a 10­-12 month old. Her size may be small, but her attitude is big! We’ve had to watch her go through more in her time than most adults. It’s not always easy, and at times has been terrifying, but she’s destined to do big things! We take life one day at a time and know tomorrow is never promised.

There are going to be days that you want to give up. You’re going to see another child and have moments of “Why mine?” and those thoughts are okay. But just remember to also ask “Why not?”. Your or your child’s diagnosis does not define you or them. Make the most of each day and encourage others to do the same. Find a support group and you’ll feel amazing!