Love our Ella Rose

Micrognathia, obstructed airway, cleft palate, absent thumbs, underdeveloped radii, fused elbows, congenital heart disease, microcephaly, imperforated anus, astigmatism, hearing loss, and eyes that make your heart melt. Phew…what a mouthful. My name is Ella Rose Monaco and my parents say I’m the best thing that's ever happened to them. I was born with an extremely rare disorder called Nager Syndrome. I’m very special because there are only 90 documented cases in the world. My syndrome doesn’t define me, but means that I have more challenges than mostchildren. I have a tracheostomy tube to help me breathe and a gastrostomy tube to help me eat. I’m very sweet, sometimes feisty, and always a fighter; never giving up. When I was born the docs weren’t too sure I would survive, but I’ve been proving them wrong ever since. I’ve made great strides, but still have a long journey ahead of me. On Wednesday July 22nd, I will undergo another jaw distraction in Charlotte NC. I will have to leave my home in Setauket, so that I can be at one of the best hospitals in the country Levine Children's hospital.  It will be hard to leave my family, nurses and friends here in LI, for 8-10 weeks but I know that is where we have to be to get the best care.  This will be my second jaw distraction surgery; it will be yet another step towards helping lengthen my  jaw and opening up my  airway. I'm very nervous (you see I'm a little older this time and wiser to how this is going to go), yet I know I'm in excellent care with Dr. Matthews and that God continues to have His hands on me. 
My dad only can take 2 weeks off of work and will try to make it down on the weekends to be with me and help mom out.  Having to pay bills in NY and  pay for living expenses in NC is going to be hard for my parents . Also, not having my nurses... who happen to also be my bestest friends too is going to be hard for me and especially my mama.  I'm hopeful that some of my family and friends can come visit and help with my care, but I know its hard for everyone to leave their homes.  With your support and prayers I hope to continue to defy odds! Whoop yeah, whoop whoop yeah! 

Love, 

Ella Rose