PHILADELPHIA - Philadelphia landmarks shine pink Thursday to honor a local, little girl, lost to Neurofibromatosis Type 1.
17-month-old Mila Gray Roomberg’s favorite color was pink. She lost her battle with Neurofibromatosis Type 1, or NF1 in March 2019.
Mila was born in September 2017 to former FOX 29 Executive Producer Jessica and her husband Dan. When Mila was a few weeks old, Jess and Dan noticed birthmarks on her back.
They took her to CHOP, where she was diagnosed with NF1.
Mila Gray Roomberg (Courtesy: Jessica Klein)
Neurofibromatosis Type 1 is a genetic disorder occurring in one in every 3,000 births and while some people who have NF1 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.
Jess and Dan launched The Magical Mila Foundation in Mila’s memory. The foundation raises awareness for NF and high blood pressure in children under three. They have also funded a successful clinical trial at CHOP and are re-educating staff on how to take accurate blood pressure readings on these children.
To learn more, visit https://magicalmilafoundation.org/.