Morgan and Lily’s Story

Lily, Morgan and Christina Nguyen, MD

These sweet 14-year-old besties have UH Rainbow nephrologist Dr. Christina Nguyen to thank for their close bond.

Morgan wasn’t quite two years old when she was diagnosed with Cystinosis, a rare genetic disease that affects every cell in her body. Lily was diagnosed a low amniotic fluid baby in utero but miraculously survived with a rare diagnosis of STAR syndrome. Their complex medical histories require them to visit multiple pediatric specialists routinely. Both Morgan and Lily are all too familiar with doctor’s offices for their young age.

When Lily was preparing for a kidney transplant Dr. Nguyen thought about her other teenage patient Morgan, who was born just days apart from Lily and had a kidney transplant earlier in the year. Dr. Nguyen asked Morgan if she would consider connecting with Lily, share her experience and be a mentor. Morgan happily agreed, and the rest is history!

The two girls became fast friends. Their moms agree it is as if they are the same person, sharing a love for basketball, and all things girlie. From sleepovers to outings with their moms, and even the occasional overlap doctor’s appointment, the girls find comfort confiding in each other, knowing their friend understands what it is like to be a medically complicated kid.

Both Morgan and Lily celebrated their one-year “KidneyVersary” in 2021, celebrating together with their families at a recent Cavs game, thanks to make-a-wish. We love this friendship, and wish these brave young girls continued confidence and strength!