BENEFITING: FOD Family Support Group
EVENT DATE: Jun 14, 2014
Hello family and friends
This June I am participating in the Franklin Lakes Triathlon, in hopes to raise money for the FOD(fatty oxidation disorder) Support Group. Due to a loss of a child this special group was formed. They reach out to families, provide information and spread awareness of rare and dwarf metabolic conditions. This organization is very dear to me because my third child Emma has a very rare metabolic condition called TFP.
Our 15 month old daughter Emma has a very rare metabolic disorder called Trifunctional Protein Deficiency. (TFP) it is part of a group of disorders called FODS- fatty oxidation disorders. She cannot have long chain fat. This is the fat that your body needs to feed your organs and keep you stabilized, so you can fast and have reserve energy when you are ill etc. It's found in all oils, egg yolks and all dairy with fat. She cannot have this fat or use fat stored in her body, so her body is in constant overdrive. Her only source of energy is food. A common cold can knock her down and her body will start using muscle for energy, which is dangerous and can be life threatening. Persons with these rare metabolic disorders have to be fed around the clock, tend to tire quickly, and can have major healthy issues. Emma is currently tube fed and is suffering from Cardio Myopathy, which is a thickening of the heart muscle. I am hoping to raise money for this amazing Group. If you could help out that would be AWESOME. Thank you from the bottom of our hearts.
Noreen and Rob Weidener