BENEFITING: Alpha Epsilon Omega Foundation
It is every parent's nightmare to have a child with a diagnosis, especially when it is a life threatening, debilitating disease. Our handsome and brave son, Aram was diagnosed with a rare disorder called PMM2- CDG, shortly after his first birthday. This rare metabolic condition has stolen our son’s ability to walk among creating many other issues. Please watch the video provided below to learn more about how PMM2-CDG can affect the life of children diagnosed with this disorder.
The purpose of this fundraiser is to fund PMM2-CDG research and find a cure for this debilitating disease. After Aram was diagnosed with this disease, we felt hopeless and could not imagine how life would be for him. We still have many unknowns about Aram’s future. Aram's condition causes various challenges for him. He has gross and fine motor delays due to his condition and at the age of almost 3, can not walk yet. Due to the effect of this disease, Aram's cerebellum - a part of the brain that controls coordination and movement - has not developed correctly; therefore, he needs to work really hard to achieve milestones that come naturally to other children. He receives various therapies to help him overcome his challenges. The effects of this disease are not limited to ataxia. A mutation in the PMM2 gene affects all body cells and organs. Most kids with this disorder have issues with their immune system, kidneys, heart, GI, liver, skin, as well as vision. Most kids with PMM2 deficiency are hospitalized often for simple colds and some lose their battle to this horrible disease early in life. Due to CDG being an ultra rare disorder, there are not many funds available for research on this rare disease. That is why, Aram and other kids affected by CDG need the help of our community to fund research to understand this disease and to find a cure before it’s too late. Currently, multiple researchers are interested to do research on this rare disorder if there are enough funds. Aram and his friends need our help. Any amount of donation will be appreciated and help us fund research towards a cure for PMM2-CDG. We aim to share Aram’s struggles and successes to bring awareness about PMM2-CDG. Please follow Aram’s journey on: https://www.facebook.com/AmourFund/ https://twitter.com/AmourFund Thanks for being a part of Aram's journey.