Luna's Life with Freeman-Sheldon Syndrome (FSS)

Luna was born on April 18, 2018 with FSS (Freeman Sheldon Syndrome). FSS is a rare genetic disorder.  It has caused abnormal scoliosis and contractors in her arms and hands. Another side affect to FSS is an allergy to inhaled anesthetics.

After birth, Luna stayed at Children's Hospital for three months for failure to thrive due to an obstructed airway. This prevented her from eating and drinking properly. Silent aspiration occurred when she tried to eat. This is why she must eat using a g-tube. Luna's small obstructed airway, caused by an underdeveloped epiglottis, resulted in Luna needing a tracheostomy.
 
Since bringing Luna home from the hospital, her parents need to give her 24-hour care for her trach and g-tube. Her father, Andy, has been her stay-at-home caretaker for the past two years. Unfortunately, Andy passed away unexpectedly on August 14, 2020. 

Further treatment for Luna will include therapy for her arms and back, and speech and feeding therapy. Hard and continuous work will hopefully result in the removal of the trach and g-tube.

These funds will help her mom, Leah, to provide the 24-hour a day care that Luna so desperately needs while providing a stable home environment. 

We are increasing our goal to $30,000 because Luna requires around the clock special care. As a result, Leah is stepping into the care-giver role that Andy played in Luna's life.