PHILADELPHIA - Philadelphia was glowing pink on Thursday night for a local little girl in honor of NF Awareness Month.
FOX 29's Executive Producer, Jessica Klein, had a baby girl named Mila who had NF and high blood pressure.
Here is Mila's story.
Mila Gray Roomberg was born on September 16, 2017.
When she was just a few weeks old, her parents, Jess and Dan, started noticing birthmarks on her back.
They took her to CHOP Dermatology and Genetics and Mila was later diagnosed with Neurofibromatosis type 1, which is also known as NF1.
Besides her birthmarks, Mila did not have any known symptoms. In fact, most of her life was normal.
But when Mila was 14 months old, her high blood pressure was discovered.
She was diagnosed with mid-aortic syndrome and renovascular hypertension.
These two conditions were rare manifestations of her NF1 that caused her high blood pressure.
Mila was hospitalized and put on 5 different medications to try to bring down her blood pressure.
After nearly 6 weeks in the hospital, Mila and her parents went home. However, two months later, her medication started to fail and Mila had to have an 8-hour surgery at the University of Michigan to save her life.
The surgery was successful but then she had a complication. She fought for one more day.
Mila passed away on March 2, 2019 in her parents arms. Mila was 17 and a half months old.
The Magical Mila Foundation has made it their mission to raise awareness of NF1, while also finding a way to obtain an accurate blood pressure on a child under the age of three.
The American Academy of Pediatrics does not require children under 3 to get their blood pressure taken unless there is reason to; like if the child has a genetic disorder, Sickle Cell, was born prematurely or has undergone a transplant.
It is also extremely difficult to obtain a blood pressure on these young children because they cry, which can elevate their blood pressure.
The Magical Mila Foundation is well aware of these issues and has funded a successful clinical trial known as "BP Under 3" at Children’s Hospital of Philadelphia, where they worked with a team of professionals to validate blood pressure equipment typically used in children over 3, in kids under 3. These machines take blood pressure on the way up instead of the way down and are less painful for young children. The technology is in use in the NICU unit, on the Nephrology floor and will soon be rolled out to primary care. The Foundation is also working with the team of doctors and nurses to re-educate staff on how to properly take a blood pressure in children under the age of three.
The Magical Mila Foundation hopes to spread the word, and eventually get the technology into more hospitals around the country and the world.
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