Philly for Milly: City lit in pink for awareness of rare genetic disorder

PHILADELPHIA - Philadelphia is lit up in pink Wednesday to shine a light on a special little girl and the legacy her parents are carrying on.

Mila was just 17 months old when she lost her life in 2019 from a rare manifestation of a genetic disorder.

Since then, Mila’s parents, Jess and Dan, have turned their heartbreaking loss into a call for action. Jess was a big part of the team, here, at FOX for a long time and it’s inspiring to see what she and Dan are doing.

"It means everything to us and to have the support of the entire city," said Jessica Roomberg. She and Dan are gazing toward the sky Wednesday night with hope and love.

"A lot of days are sad and hard and tonight is a night where I look up and I can see and remember her beauty even though she's not physically with us," said Jess.

The night is known as Philly for Milly. It is when landmarks around the city illuminate in pink in awareness of a rare genetic disorder and in memory of Jess and Dan's firstborn. Their daughter Mila lost her battle with NF1. She was 17 months old when she died in 2019 from neurofibromatosis type 1. Her young life now leading to changes and resources for others.

"The most gratifying thing to us is when we hear from parents whom we were affected by our work. People from all over the country reach out to us with questions and care and advice and that really makes us feel we are doing our job," said Dan.

The Romberg’s’ work in Mila's memory include among many things, ensuring accurate blood pressure readings in kids which could signal the presence of a vascular condition.

"So, we've funded a successful clinical trial using a different type of machine that gets blood pressure on the way up instead of down. So, it is less painful for kids. They do not scream and cry and it is getting accurate readings on this young age group," said Jess.

"Since we started our project with CHOP our numbers are up 200 percent but we still have a long way to go. We started at 2 percent of kids under three who need their blood pressure taken and actually having it done and done correctly. So, 200 percent is a huge improvement," said Dan.

Wednesday night, with the city lit in pink, this family is encouraged and feeling the presence of their baby girl.

"We try to find any possible way that we can to hold on to Mila's bright light and energy. To be able to see it on display tonight and shining bright and pink means the world to us. We are so lucky and feel so blessed," said Jess.

They also started the Magical Mila Foundation in honor of their daughter. For more information, visit the Magical Mila Foundation website.