Story – 04/04/2008

Alivia Rose

2007 / 2008 Youth Ambassador for Easter Seals Central Pennsylvania South Central Region

Meet Alivia, a bright-eyed 8-year old girl who resides in York, PA with her parents and little sister. Alivia enjoys participating in therapeutic recreation programs offered by Easter Seals Central Pennsylvania, a Central PA Combined Federal Campaign listed charity.

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, horseback riding, collecting butterflies and hosting tea parties. Rumor also has it that she is Tinker Bell’s biggest fan.

The therapeutic recreation programs at Easter Seals Central Pennsylvania allow Alivia Rose to experience all the activities her friends and schoolmates enjoy, including snow skiing, aquatics, outdoor soccer and horseback riding.

One look at the smile on her face is all that the Easter Seals' staff and volunteers need to recognize the importance of these programs in her life.