Help Baby Penelope Fight a Rare and Lifelong Condition

On February 5th, we (Jason Harris and Adriana Carranza) welcomed our beautiful daughter and first child, Penelope Elsa Harris, into the world. But what should have been the happiest day of our lives quickly turned into our biggest nightmare.

A Heartbreaking and Unexpected Diagnosis

During Adriana's pregnancy, doctors noticed Penelope's enlarged bladder and diagnosed her with LUTO (Lower Urinary Tract Obstruction). We were monitored closely, with weekly scans and an early induction planned at 37 weeks. The NICU team was prepared to assess Penelope at birth–but nothing could have prepared us for what came next.

After a long and difficult labor, we were overjoyed to meet Penelope and relieved she could breathe on her own and had some urinary tract functionality. Just minutes after her birth, Jason rode with her in an ambulance across D.C. to Children's National Hospital (as planned), while Adriana remained at Holy Cross to recover. Hours and numerous tests in the NICU later, separated at two hospitals, we received the worst possible news.

The initial diagnosis was wrong. Instead, Penelope was diagnosed with Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome (MMHIS)–a life-threatening and extremely rare condition affecting fewer than 500 people worldwide. A doctor told us most babies with this condition don't survive past one month.

Our world shattered in an instant.

A Fighting Chance

MMIHS affects the smooth muscles in Penelope's digestive and urinary systems and has caused her intestines and colon to be undersized and dysfunctional, making it nearly impossible to process food, pass stool or urinate without medical intervention. She is currently unable to eat by mouth, which raises serious concerns about her body not absorbing proper nutrition. All clinical assessments have pointed to an extremely rare diagnosis of MMIHS, which is believed to be a genetic mutation, and we currently await Penelope’s genetic test results to confirm this.

But there is hope. Days after we received this horrible news, a doctor shared that children with MMIHS have defied the odds–growing into teenagers and young adults. It's not a death sentence, but it does mean a lifetime of medical treatments and equipment, surgeries and specialized care.

We are holding onto that hope for our daughter. At just a few days old, Penelope underwent her first surgery to receive a feeding tube and colostomy bag so she can digest nutrients. We are relieved that the procedures were successful, and in the coming weeks, we will develop a treatment plan and aim to consult with specialists in Pittsburgh who have studied this condition.

How You Can Help

Penelope's journey will be long and full of uncertainty. We are facing months in the NICU and a lifetime of medical expenses, including:

Any donation–big or small–will help ease the enormous financial burden and allow us to focus on what matters most: giving Penelope the best possible life.

We are endlessly grateful for your support, prayers and well wishes. Please share Penelope's story and keep her in your hearts ❤️