Alexis F.

Child, Congenital Nephrotic Syndrome

Alexis, or Lexi as she is known by her family, was diagnosed with Congenital Nephrotic Syndrome when she was six weeks old. Since diagnosis, she has been admitted to the Children’s Hospital 12 times and Nebraska Medical Center once. She’s had two surgeries – a double nephrectomy and then a hernia repair two years ago. She’s had multiple ER visits and been on many medications.

Through it all she has flourished. No one would even know anything was wrong with her meeting her the first time. She was slightly delayed on walking and crawling because her abdomen got so big between 4-6 months. But since then she has taken off running – literally. She is a sweet but sassy little three-year-old. She gives the best hugs. For someone who has gone through more than most in her short life, she doesn’t even seem to notice. She loves her doctor kits. She knows how to use all the different medical items. She plays doctor on her dolls or her cousins. She loves her kitchen set and making things in her kitchen. She likes Wonder Woman and Supergirl. She likes to watch the airplanes go by since we live near the military base I work at.

She just brightens everyone who meets her. Whenever we leave daycare she has to give everyone she sees a hug. I’m amazed to see her grow and learn everyday. She’s so smart and seems so much older for her age. It’s hard to believe my baby is three years old already and to see how far she has come. I only hope she continues to thrive, especially after she gets a new kidney.