Seba Day
Sebastian, for which our school is named, was a uniquely sassy and undeniably sweet baby. From the very moment he graced the world with his presence, it was clear that he had so much potential and a lot to live for. Yet, tragically, life was too short for this precious little baby, leaving an unforgettable impression on everyone who had the joy of knowing him.
Seba (Say-Buh) was diagnosed early on with Lowe Syndrome, a rare and complex genetic disorder that primarily affects boys. This syndrome is characterized by a variety of developmental and physical challenges, making it an uncommon but significant condition that requires special attention and support. His mother supported him solely on her own, with some occasional help from friends, but it was her ongoing struggle that made us realize the pressing need for Bend, Oregon to cultivate a close-knit community dedicated to addressing medical needs and providing robust support for families facing similar challenges. We sincerely hope that someday soon we can truly become that welcoming and supportive community that everyone deserves.
Lowe syndrome, also known as Oculocerebrorenal syndrome, is a rare genetic condition that affects the eyes, central nervous system, and kidneys. Symptoms include:
Eyes
Cataracts are present in all affected boys, and glaucoma in about half. Other eye symptoms include a prominent or swollen front of the eye, and distorted anatomical configuration of the angle.
Muscles
Babies with Lowe syndrome have poor muscle tone (hypotonia) at birth, and delayed motor development.
Kidneys
Lowe syndrome can cause kidney abnormalities, including renal Fanconi syndrome, which prevents the kidneys from reabsorbing nutrients.
Bones
Soft, bowed bones, also known as rickets, can occur. Bone fractures, scoliosis, and joint problems can also develop.
Behavior
Psychiatric manifestations include obsessive-compulsive behavior, irritability, aggressiveness, self-injury, and violent tantrums.
Seizures
Seizures occur in about half of patients by age six.
Intellectual ability
Intellectual ability can range from normal to severely impaired.
Facial features
Deep-set eyes, frontal bossing, chubby cheeks, and fair complexion with blonde hair are common.
Dental problems
Dental findings include protracted retention of primary teeth, enlarged pulp chambers, and dysplastic dentin formation.
There is no cure for Lowe syndrome, but many symptoms can be treated with medication, surgery, physical and occupational therapies, and special education.
Medical needs are nothing to be intimidated by, and it is essential to approach them with a sense of understanding and support. Recognizing that everyone has unique healthcare requirements can help foster a more compassionate perspective. By prioritizing proper communication and education, we can alleviate any fears that may arise concerning medical matters.