Condition: Aicardi Syndrome
City, State: North Bend, WA
Club: St Monica School; Sparrow Club Service Hours:
Date Adopted: 10/16/2014
Sierra's Story:Sierra is a special 11 year-old girl in the 5th grade. Sierra is a very happy, loving, social, and playful little girl who enjoys other people. Sierra’s happiness is highly contagious.
Sierra was born a perfect baby girl. At two months old, she began having seizures. This started the process of the eventual diagnosis of Aicardi Syndrome. Sierra is missing a part of her brain called the corpus callosum, the piece that connects the left and right halves of the brain.
Aicardi Syndrome is a rare neurological disorder that only affects girls. The syndrome includes epilepsy, low muscle tone, physical and mental delay, and severe speech impairment. Sierra can walk by herself, but only for short distances on flat surfaces. Sierra can talk, but is only able to say a few words: Hi, bye-bye, and Mama.
Sierra suffers from incurable epilepsy. Despite deliberate efforts to prevent seizures thru medical interventions, seizures still occur on a regular basis. Currently, Sierra has a seizure about once per week lasting 10-15 minutes.
Sierra can have a seizure any day and at any time of the day. During a seizure, Sierra is unable to control her body. When a seizure ends, Sierra is unable to walk or sit-up even with assistance and remains extremely lethargic. Recovery from the seizure can take several days, during which time Sierra’s arm and leg movements are very shaky and she is extremely unstable on her feet.
Besides just going to special needs elementary school, there are many appointments to go to. Every activity is aimed at giving Sierra the best quality of life.
• Physical therapy and speech therapy sessions every week year-round
• Horseback riding in Ellensburg every other week over spring and summer months
• Frequent planned and unplanned doctor appointments (pediatrician, neurologist, ear-nose-throat specialists)
Persistence pays off. The challenges faced have not been easy, but the results continue to be very rewarding. Sierra learned to walk at age 4, something many doctors never thought possible. Sierra has touched many hearts with her continued happiness. Despite her disabilities, she is a fighter. She has taught her parents to slow down and appreciate the simple things.
Sierra and her family are very active. They enjoy the outdoors - hiking, biking, swimming, and playing at the park or the beach.
Sierra cannot hike without help. She has grown too large to be carried safely in a backpack. Her limited endurance, strength and coordination deny her access to the outdoors. Her family cannot give her the freedom and pleasure of going on a hiking trail.
The TrailRider provides wilderness access and freedom for Sierra. Sierra recently went on a vacation in Montana while using a rented TrailRider. The smiles this brought to Sierra were priceless and rejuvenating.
Sierra likes to do a lot of things:
• Give hugs and smile
• Read books and magazines
• Ride the horse “Lad” in Ellensburg
• Ride her bike (a special tricycle)
• Watch Barney and PBS kids
• Play games
o Duck-duck-goose, puzzles, hide-n-seek
o Electronic - on iPad or LeapPad
• Sit on the floor and play ball with you
• Dig in the sand with buckets and shovels
• Go hiking to explore nature’s beauty and freedom