Fighting Lipodystrophy

Hello, I have a beautiful 2 year old daughter. In May of 2014,  she was diagnosed with a very rare genetic condition called Agpat2 Cogenital Generalized Lipodystrophy. This is a disease that occurs in 1 out of 10 million people. She is unable to store fat properly as this disease causes any fat she takes in to store into her muscle (vital organs). She is unable to have any foods that contain any fat, trans, saturated, preserved foods or sugars, she cannot have any juices as this diseases causes diabetes with high insulin resistance. She has abnormal muscle stiffness (spasticity) as well as hypertriglyceridemia and an incredible appetite she has as a result of the disease.  She starves daily regardless of how much she takes in. This disease interferes with her leptin which is a fat cell that sends signals to your brain to tell you to stop eating. She does not have this capability and as a result constantly experiences starvation and screams with hunger pains. Her cries are sudden and unexpected and does not stop until she is fed which after a very short while she goes into the same fits of hunger because of another disorder she also has which is called polyphagia. Simply put, (excessive eating). We are hoping to spread awareness for this disease through travel to meet elite medical professionals in her field as there are very few and we are finding that they are coming to the states with new developments on this disease offering conferences to help educate us about this disease. It's imperative that we attend as many as we can.  As well as spread awareness for our foundation, www.lipodystrophyunited.org.  We are in search of a cure and we won't stop until we find one.  What an amazing journey God has chosen for us to travel . We are greatful and we will fight a good fight.