2011 Family Advocacy Day All-stars

Meet Franchesca P., Brooklyn, NY

Franchesca is a mature, friendly 14-year-old who stands out with her warm, sweet smile, beautiful long hair and fashionable, trendy outfits. She lives in Brooklyn, NY with her mom, and in close proximity to many aunts, uncles and cousins. When she was 2 years old, doctors at Morgan Stanley Children’s Hospital of New York-Presbyterian diagnosed Franchesca with Niemann- Pick disease type B, a progressive disease that impacts her liver, spleen and lungs. At this time there is no known treatment or cure. Franchesca enjoys school, reading mysteries, listening to music and playing on her computer. She is an eighth grader and her favorite subject is social studies, with a focus on history and culture. Franchesca is fluent in Spanish and English, and often helps translate for her mom, who speaks primarily Spanish.

Meet Lily W., Lebanon, ME

Lily is a unique 1-year-old who loves playing with her 5-year-old brother, coloring, eating and being outdoors. Born with a severe skull deformity called craniosynostosis and a rare ge¬netic condition called Saethre-Chotzen syndrome, doctors referred the family to Children’s Hospital Boston within minutes of her birth. There she had her first skull surgery at just 2 months old and was helmeted for the next six months. Regular medical appointments and helmet adjustments kept her busy until Lily had skull reconstruction performed at 15 months. The outcome was a great success and allowed the family to reduce the regular trips to the hospital to once a month. It is probable that Lily will have another skull surgery and a few minor procedures, but today she’s a proud graduate from physical and occupational therapy. She is growing into a beautiful little redhead with a loving personality.

Meet, Nadiya P., Severn, MD

Nadiya loves dogs, music, Disney World, playing on swings and singing. A complicated seizure disorder  and global disabilities make life challenging for this otherwise happy 6-year-old. Last year, Nadiya was evaluated at Mt. Washington Pediatric Hospital (MWPH) in Baltimore for feeding problems and began weekly therapy there. The ketogenic diet she is on now makes her intractable epilepsy manageable. In the fall, she underwent major orthopedic surgery and spent three months at MWPH. Her parents believe her best choice for rehabilitation was MWPH as she continues her recovery there as an outpatient. Nadiya lives with her parents and older sister, Anastasiya. Besides her family, she loves all the Disney Princesses.

Meet Minerva L., Fort Washington, MD

Minerva is an incredibly smart, loving and energetic little princess. At 18 months, doctor’s at HSC Pediatric Center diagnosed her with quadriplegic cerebral palsy and began the hard work of treatment and rehabilitation. Since then, she has truly amazed her doctors, therapists and teachers through self-motivation and desire. As a result of her hard work and dedication, her condition continues to improve. Minerva enjoys coloring, reading, travelling and Disney World. She has proven to herself and others that having a disability doesn’t define who you are, but how much stronger you can become.