A mother and father from Pennsylvania have established the Magical Mila Foundation to support families affected by Neurofibromatosis (NF) in memory of their daughter, Mila, who tragically passed away from the disease. Mila’s parents, Jessica and Dan Roomberg, are determined to provide assistance and raise awareness about NF, a rare genetic disorder. Read on to learn more about their inspiring story and the work they are doing through their foundation.
When Mila was born in 2017, doctors discovered a heart murmur but assured Mila’s parents that it would resolve itself within a year. However, as weeks passed, the Roombergs noticed birthmark-like patches on Mila’s back, prompting them to seek medical advice. Despite visiting a pediatrician, their concerns were dismissed, prompting them to conduct their own research.
After a consultation with genetics and dermatology teams at Children’s Hospital of Philadelphia, Mila was diagnosed with Neurofibromatosis type 1 (NF), a genetic disorder affecting approximately one in every 3,000 live births. NF1 can manifest in various ways, including learning differences, early puberty, hypertension, scoliosis, and tumors. Although these tumors are usually non-cancerous, they can lead to significant health issues and vision impairment.
Mila’s diagnosis devastated her parents, but they immediately began researching the disease and seeking the best possible care for their daughter. Under the surveillance of the NF team at CHOP, Mila thrived and achieved all her milestones. However, when she was 14 months old, a routine follow-up visit revealed a narrowing of her aorta, causing dangerously high blood pressure.
Mila underwent emergency surgery at the University of Michigan to correct the narrowing and restore proper blood flow. The surgery was a success, but tragedy struck when Mila experienced cardiac arrest during a subsequent surgery. Despite efforts to save her, Mila passed away in her parents’ arms.
Devastated by their loss, Jessica and Dan Roomberg sought to find a meaningful way to honor Mila’s memory and make a difference in the lives of other children. In collaboration with doctors at CHOP, they developed the “BP under 3” initiative to improve accurate blood pressure readings for children under three with health issues. Their foundation, the Magical Mila Foundation, has funded educational trainings and technology to ensure accurate blood pressure measurements, leading to a 200% increase in accurate readings at CHOP.
In addition to their efforts in pediatric care, the Roombergs have raised over $500,000 for CHOP through the Magical Mila Foundation. They view their work as a way to continue parenting Mila and keep her memory alive. To learn more about Mila’s story and support the Magical Mila Foundation, visit magicalmilafoundation.org.
Sources:
1. Fox News: [Link to the original article](https://www.foxnews.com/lifestyle/parents-foundation-daughter-neurofibromatosis)
