Alani's Fight Against Cogenital Generalized Lipodystrophy
Organized by: Rachel Daniels
Hello, I have a beautiful 7 month old daughter. In May of this year, 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 contains any fat, trans, saturated, preserved foods or sugars, she cannot have any juices as this diseases causes diabetes with high insulin resistance. She currently has hypertriglyceridemia and is on a special formula that is shipped to us monthly. Although we have some assistance from the state in gaining this milk we continue to run out monthly as it's just not enough to feed her. 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 feels as if she's starving and screams with hunger pains. She screams suddenly as it onsets and does not stop until she is fed which after a very short while she goes into the same fits of hunger. She also has fluid on her brain which doctors feel is possibly the cause of her large head and extremely stiff joints but are unsure at this time. We are hoping to raise money to store a few cases of this special formula so we never have to worry about running out as this formula cannot be purchased over the counter. The formula is called Enfaport by Enfamil and it comes in a 24 pack of 8oz cans. One case costs just a little over $100.00. This milk is a medical necessity as it's her only means of nutrition. I am a single mother. She is one of five children and I became unemployed just to care for her and the struggle is so hard but our Faith is strong. The need is so intense and so much that I cannot begin to imagine how I am going to tell her that she cannot eat anything that her brothers or sisters eat, her friends, family etc...That she has a rare condition that requires frequent blood tests to monitor her organs and cholesterol. That her inability to store fat will make her continue to appear small and extremely muscular. That all meals have to be home prepared in a special MCT oil to maintain her cholesterol throughout her life and brought to her even in school which can isolate her socially. That she cannot enjoy special treats and parties as it's a huge risk to her health. It just goes on and on...My heart is so heavy. God Bless those who can and will help us.