Birthday: December 9, 2007
Adopted by Tim and Loretta Strickland
Began showing signs of disorder: November, 2011
Aiden Strickland is a happy five year old that loves to play ball, swim and play with his friends. He just finished his pre-K school year at Hampton Cove Christian Academy. Aiden suffers from ubiquitin disorder, a rare genetic neurodegenerative condition.
In November 2011, just before he turned four years old, he began experiencing trouble using his right hand. Knowing his biological family’s history, the Stricklands sought help from Dr. Martina Bebin at North Alabama Children’s Specialists in Huntsville. Dr. Bebin immediately took up the fight to solve the mystery of Aiden’s condition. Aiden’s biological family has suffered the loss of several family members from the disorder over the past sixty years. His twenty-four year old biological mother currently resides in a care facility in north Alabama and is in the advanced stages of the disorder.
After local testing, Dr. Bebin enlisted the help of Dr. Edward J. Lose, department of genetics at the University of Alabama Birmingham. Dr. Bebin and Dr. Lose met with a group of family members to gather DNA samples and to discuss the family’s history.
Dr. Bebin coordinated with the genetics lab at Harvard University for testing to determine the true cause of the condition. What would have normally taken six weeks stretched out to over four months. Speculation was that the condition was a form of ALS, but in the end it was determined that it was ubiquitin disorder, a newly discovered condition in which the spent protein isn’t flushed from the neurological cells by the ubiquitin system.
The protein becomes a tangled mass that blocks the signal from the brain to the muscles, eventually affecting the use of the limbs, swallowing, speech, breathing and other bodily functions requiring muscles. Aiden’s troubles began with his right hand, followed several months later by his left hand. In May while playing tee ball, his left leg began to show signs of the disorder. In just one short month he had lost his ability to walk. He has recently been fitted for a power wheelchair.
During a recent visit to Children’s Hospital in Birmingham, Dr. Davis placed Aiden’s name on the Magic Moments list, an organization that helps make the wishes of terminally ill children come true. Aiden’s wishes include meeting the Alabama football team and getting a jersey and a signed football, a golf cart to get around to his friends’ houses, or a visit to meet the Atlanta Braves and get a signed baseball (Aiden played on the Braves tee ball team).
Since Aiden is one of the first in the world with this diagnosis, there are no support groups. This rare and fatal disorder claims the lives of its victims within a few short years. One of our goals is to connect with others around the world with this diagnosis to share information and offer support.