RAISING UP RILEY
Sweet little angel baby, Riley Garriga, was born in Mississippi(USA) January 2018 with a very rare disease called Thrombocytopenia Absent Radius Syndrome (“TAR Syndrome”) (approx. 1 in 200,000 births).
This event is an effort to kick some "FUN" into our donors' lives and to support Riley's cause in addition to keeping everyone updated on Riley's amazing progress and also to begin helping educate others about this very rare genetic disease: (or TAR Syndrome).
Rare diseases like Riley’s are cost prohibitive to treat as medicines and procedures are expensive to create and not enough people are affected to cover the cost of production.
Riley’s various treatments require the coordinated efforts of a large team of medical professionals, such as pediatricians, surgeons, physicians who diagnose and treat disorders of the skeleton, joints, muscles, and related tissues (orthopedists), specialists in the study of the blood and blood-forming tissues (hematologists), physicians who specialize in heart disease (cardiologists), physicians with dedicated training and unique experience in the management of diseases of the gastrointestinal tract and liver (gastroenterologists) as well as others... Learn more about TAR Syndrome:
TAR SYNDROME - Thrombocytopenia-absent radius (TAR) syndrome is a rare disorder that is present at birth (congenital). It is characterized by low levels of platelets in the blood (thrombocytopenia) and absence (aplasia) of the long, thin bones of the forearms (radii). Other abnormalities are often present including additional skeletal defects such as absence or underdevelopment of the other bone of the forearm (ulna), structural malformations of the heart (congenital heart defects), and kidney (renal) defects.
Raffle River has helped RAISING UP RILEY
Sylvia Clayton Knight, Main Contact
Sylvia Clayton Knight
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