Emily Filomena Schiavone | CaringBridge

Emily Filomena Schiavone Happy Sun Heart

Latest post: Jun 26, 2018
Thank you for visiting my cyber home here at Happy Sun Heart. I am Emily Filomena Schiavone. I am a 9 yr. old Princess who was diagnosed with Gauchers Disease Type 3 at the age of 2 years old. Multiple endocrine neoplasia type 2( MENS2A) I also have been diagnosed with. Recently, two more diseases have been found ( Mass Cell Activation Syndrome, and Amplified Musculoskeletal Pain Syndrome). Gauchers disease is a disease caused by a defective gene that prevents the body from producing sufficient amounts of an important enzyme that plays a critical role in the complex process the body uses to remove and recycle worn out cells. It involves many organ systems, such as liver, spleen, lungs, brain, metabolism and bone marrow. She receives Enzyme Replacement Therapy of weekly infusions thru a port placed near her heart, to help shrink the spleen and liver. Even though her prognosis is unknown with no cure in sight, we are hopeful the medicine being developed now will be available in a few years that will cross the brain barrier. Finally, at 2 years old we have received answers we sought since Emily was born. We are geared up for this journey which consists of weekly infusions, doctors, and monitoring. We appreciate all the thoughts and kindness sent our way and feel overwhelmed by the generosity from strangers even. Any donations made on this site do not benefit Emily. Donations are to be sent to Happy Sun Heart Foundation 46 SpringHill Drive Howell, NJ 07731, or GoFundMe under Emily Filomena Schiavone. Thank you for your interest in our Princess. Blessings

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