Posts Tagged ‘Treacher Collins’
Magdalena Newman’s Normal: One Kid’s Extraordinary Journey, beautifully details her oldest son Nathaniel’s experience with Treacher Collins syndrome, a congenital disorder that causes craniofacial deformities. At birth, Nathaniel’s ears, eyes, cheekbones, and jawbone were not properly formed, necessitating hearing aids, a gastrointestinal tube, a tracheostomy tube to assist breathing, and over sixty surgeries the first fifteen years of his life. Newman, who had been a professional concert pianist in her native Poland, was totally unprepared to care for a baby with such enormous medical needs, Yet she immediately rose to the challenge, becoming laser focused on ensuring Nathaniel could lead a normal life. Magdalena and her husband Russel’s fierce advocacy serve as a guiding light for their family and community, navigating through Nathaniel’s complicated medical procedures (as well her own bouts with both non-Hodgkins and Hodgkins lymphoma diagnoses) with grace and dignity. Newman charts her family’s journey with raw honesty, while Nathaniel’s perspective pops up throughout the memoir, emerging as a clever and funny teenager with his wry commentary. Magdalena and Nathaniel’s journey take them to unexpected places, including a friendship with R.J. Palacio, who saw a picture of Nathaniel while doing research for Wonder.