PHILADELPHIA - May is NF Awareness Month and if you're in Philly Thursday you'll notice something very special in honor of a local baby girl.
Boathouse Row, the Ben Franklin Bridge, One and Two Liberty, the Melon Bank Center and several other buildings in Center City are all glowing pink.
It's because pink was 17-month-old Mila Gray Roomberg's favorite color. Mila battled Neurofibromatosis Type 1. It's a genetic disorder occurring in one in every 3,000 births, while some people who have NF inherit the gene from their parents, others, like Mila are the first in their family to have it.
Symptoms can include benign tumors and skeletal abnormalities and in Mila's extremely rare case, vascular issues leading to high blood pressure.
Mila lived a very normal life until her high blood pressure was discovered at 14 months old.
In early 2019, she underwent surgery to fix her vascular issues. She passed away a couple of days later in the arms of her parents. Her mom, Jessica, is one of our executive producers.
Jess and her husband, Dan, have launched The Magical Mila Foundation in her memory, which raises awareness for NF and high blood pressure in children under 3. They have also funded a successful clinical trial at CHOP and are re-educating staff on how to take accurate blood pressure on these children.
To learn more, visit https://magicalmilafoundation.org/
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