Finding a Cure for Marisa

Marisa was only 4 years old when she was told she had ROHHAD (Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Automic Dysregulation) which has no treatment or cure.  This meant she went from being a petite, confident, athletic and energetic child with not a care in the world to being overweight, anxious, and on a ventilator 24/7.  Marisa had to learn to now function with a large body on little frame; have a tube coming out of her throat and be on all sorts of medication, forbidden to go swimming because of the hole for her trach, to not be able to eat even though her brain is always tells her she is hungry and to never being able to be alone.  Marisa is now 9 and she has the soul of an angel and a spirit like no other.  She drags her vent to go where she wants and finds her way through nurses, pills,machines, monitoring and lack of privacy.  We do not know how she goes through the day with a smile but she has hope that there is a cure and that what her brain shut off will be turned on again.  All we need are the funds to do the research. Why Why why does she have to live on vent and be overweight even though she is on a diet.  We need to know the WHY and HOW of ROHHAD and since there is minimal funding for this rare disease answers to these questions seem impossible.  Please do not let Marisa suffer another year and question why the answer cannot be found.  A simple donation could change Marisa's life as childern with ROHHAD do not typically reach adulthood. Yes it is that easy to make a difference.  Thank you for finding a cure for Marisa.