Alivia Rose
9-year old

A bright-eyed 8-year old who enjoys participating in a wide variety of Easter Seals Central Pennsylvania’s therapeutic recreation programs, Alivia resides in York, PA with her parents and little sister Ava.

Concern over her frequent illnesses and lack of balance sent Paul and Tina, Alivia's parents, to her pediatrician for answers. Alivia has since been diagnosed with ataxia-telangiectasia ("ay-TACK-see-uh Teh-LAN-jick-TAY-sha"), better known as A-T. A progressive, degenerative disease that affects a wide variety of body systems, this genetic disease weakens Alivia’s immune system and affects her fine and gross motor skills. An electric scooter helps Alivia overcome many of the resulting physical obstacles.

"[The] first signs are usually a "wobbly" lack of balance and slurred speech caused by 'ataxia,' which means a lack of muscle control," (A-T Children's Project). Read more about ataxia-telangiectasia from the National Institute of Neurological Disorders and Stroke.

This diagnosis does not affect Alivia’s attitude or zest for life. She loves gymnastics, is a Brownie, and enjoys camping, skiing, horseback riding, collecting butterflies and hosting tea parties. Rumor also has it that she is Tinker Bell’s biggest fan.

Lili Grace
8-year old

Residing in Hanover, PA with her parents Natalie and John, Lili is a sweet, gentle and loving 7-year old who was diagnosed at 6 months with infantile spasm syndrome, a syndrome of epilepsy. After suffering from numerous and escalating complex seizures, Lili's doctors presented her parents with a diagnosis of Lennox Gastaut syndrome, a severe form of epilepsy.

"Lennox-Gastaut syndrome is a severe form of epilepsy. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks)." (National Institute of Neurological Disorders and Stroke).

Lili experiences periods of frequent seizures mixed with brief, relatively seizure-free periods as is typical of Lennox-Gastaut syndrome. She has multiple types of seizures and has many seizures everyday. As a result, Lili's global development has been delayed and she is currently nonverbal.

Though there is currently no cure for this disorder, Lili is determined to enjoy life to the fullest. She uses a specialized stroller to safely move from place to place, loves to swim, ski, playing in her swing at home and really enjoys riding her specialized bike. Lili often surpasses her typically-developing counterparts in her desire for physical activity. If an activity involves movement, Lili is up for it. Lili's parents know that Easter Seals Central Pennsylvania’s therapeutic recreation programs provide a safe environment in which Lili can experience everything from horseback riding to water-skiing.