Ella Musalek is a fun-loving, 2.5 yr old girl.  Enjoys playtime  and cartoons.  Hobbies include coloring pictures, looking at books, and dancing to anything with a beat.  Specializes in afternoon naps and taunting her big sister.

New York or Bust

In June of 2009, Ella was born with a lymphatic malformation (LM), one form of a vascular anomaly.  It is very rare; less than 1 in 50,000 babies are born with this condition.  A Lymphatic Malformation is an abnormal development of the lymphatic system during the earliest stage of pregnancy.  Currently, the cause of this abnormal development is unknown.  The malformation causes fluid to pool in the normal tissues of Ella’s face and neck, creating multiple benign cysts.  Each malformation is unique, making diagnosis and treatment difficult.  Ella’s cysts involve her airway, right side of her face and neck, and the floor of her mouth.  While this condition is not curable (YET), it is manageable with treatment.  

After 2 months of watching Ella’s LM change and grow, her parents met Sherri Foster, founder of the Waner Foundation.  Through Sherri and the Foundation, Ella’s parents learned of Dr. Milton Waner and Dr. Alejandro Berenstein.  These doctors provide Ella a multidisciplinary team of physicians that meet and discuss her case and treatment plan on an ongoing basis.  It is critical that Ella be seen by a physician who treats children with this rare condition routinely-Dr. Berenstein and Dr. Waner treat several every day.

Ella’s first journeyed to the Big Apple at just four months old for a life-changing meeting with her new doctors.  Less than a week later, Ella began an aggressive treatment plan, which includes sclerotherapy.  During sclerotherapy, doctors use ultrasound to target the cysts in Ella’s LM.  The cysts are then drained and injected with a sclerosing agent that will scar the inside of the cyst, preventing it from refilling with fluid.  Due to the large number of cysts involved in Ella’s LM, she has endured 9 sclerotherapy treatments with doxycycline and bleomycin, a tonsillectomy and adenoidectomy, and barely avoided the need for a tracheotomy. 

After 11 round trips to NYC, Ella’s family learned in the fall of 2011 that her airway is finally safe and her aggressive treatment plan is complete.  There is always a chance of reoccurrence for Ella, but aggressive treatment at a young age will hopefully help her avoid the serious transgressions of this disease.  For now, Ella and her family are enjoying some much needed normal family life, without any current plans for travel…. 

Updated: February, 2012