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Emily Filomena Schiavone
Happy Sun Heart
Sep 9, 2016
Thank you for visiting my cyber home here at Happy Sun Heart. I am Emily Filomena Schiavone. I created this name and voiced it to my mommy while she draws happy suns and hearts for me, it is my chant. I am a 8 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 I welcome your visits, comments, love, support and prayers as I lead Mommy and Daddy down this long journey. I chose them to be my parents because I knew they have what it takes to supply the care and support I demand. Please do sign my guestbook as Mommy will be reading it to me frequently. Please note 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 Remember Happy Sun Heart
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. Hidden gifts are surfacing everyday with this life experience. I use this space to story tell Emily's experience as well as mine her Mommy; as it helps to process everything. Thank you for your interest in our Princess. Blessings