Max
Scientist, movie maker, and perhaps future President of the United States, Max is a strong-willed young man who avoids risk and genuinely cares about others. He is very outgoing and seems to easily find ways to connect with people. He has a silly sense of humor, enjoys jokes of all types, and readily shares his joy with the world. He always seeks a better understanding of the world around him. His thirst for knowledge and ability to soak up new information amazes us. He is a passionate advocate for rare disease and has used his charm, charisma, and perseverance to woo politicians and help important legislation pass through the House of Representatives. He considers himself famous on Capitol Hill and will always take the time to stop and sign an autograph. He loves to play board games and card games and reigns as house Uno champion. He is an excellent Poke-Monster artist and has a good musical ear. He is a very creative Lego master. He takes pride in his work, whether it be artwork, schoolwork, or playtime projects. He maintains an extensive collection of stuffed animals, each with very specific memories of where he was when they met and how they were obtained. He enjoys cuddling, bedtime stories, and bedtime songs. He is a great joy in our lives and the world is a better place because of him.
~Lisa, Max’s Mom
Noonan Syndrome
Noonan syndrome is a genetic disorder that is typically evident at birth. The disorder is characterized by a wide spectrum of symptoms and physical features that vary greatly in range and severity. In many affected individuals, associated abnormalities include a distinctive facial appearance, a broad or webbed neck, a low posterior hairline, a typical chest deformity, and short stature. Characteristic features of the head and facial area may include widely set eyes, skin folds that may cover the eyes' inner corners, drooping of the upper eyelids, a small jaw, a depressed nasal root, a short nose with broad base, and low-set, posteriorly rotated ears. Distinctive skeletal malformations are also typically present, such as abnormalities of the breastbone, curvature of the spine, and outward deviation of the elbows. Many infants with Noonan syndrome also have heart defects, such as obstruction of proper blood flow from the lower right chamber of the heart to the lungs and thickening of the ventricular heart muscle. Additional abnormalities may include malformations of certain blood and lymph vessels, blood clotting and platelet deficiencies, learning difficulties or mild intellectual disability, failure of the testes to descend into the scrotum by the first year of life in affected males, and/or other symptoms and findings.
Artist: Sara Breslin
