THE KICKSTARTER PROJECT – GIVE AIDEN A HAND – IS LIVE.
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Six-year-old Aiden Strickland’s world has changed drastically in a short time. Aiden has lost the use of his right hand, his ability to walk, and the ability to hold his head upright due to a rare genetic condition similar to ALS. Aiden was playing tee ball in May of 2013, but by mid-June of that same year, he was in a wheelchair. Fortunately, his attitude remains positive, and he is determined to do things for himself.
Name: Aiden Phillip Strickland
Birthday: December 9, 2007
Adopted by Tim and Loretta Strickland: 2011
Began showing signs of disorder: November 2011
Aiden Strickland suffers from a rare genetic degenerative neuromuscular condition. As a toddler, his motor skills were advanced. Aiden could kick and throw a ball well beyond his years, and he could even snap his fingers on both hands. But, things are much different now. In August of 2013, Aiden’s parents planned for him to start Kindergarten at the new elementary school in Hampton Cove. Unfortunately, Aiden suffers from ubiquitin disorder, and the physical inabilities the disease causes have rendered him unable to attend school like other children his age.
In November 2011, just before turning four years old, Aiden began experiencing trouble using his right hand. Knowing his biological family’s history, Aiden’s adoptive parents, Tim and Loretta Strickland, sought help from Dr. Martina Bebin at North Alabama Children’s Specialists in Huntsville, Alabama. 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, including his twenty-four year-old biological mother who recently passed away due to the disorder.
After local testing, Dr. Bebin enlisted the help of Dr. Edward J. Lose of the Department of Genetics at the University of Alabama Birmingham. DNA samples from Aiden’s biological family were gathered and sent to the genetics lab at Harvard University for testing to determine the true cause of the condition. 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 disorder 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 voluntary muscles eventually affecting the use of the limbs, swallowing, speech, breathing, and other bodily functions requiring voluntary muscles. While uncertainty about the cause of this disease remains, Harvard University recently sent the Stricklands a letter reconfirming that the disease is similar to childhood ALS, which is also incurable.
Aiden’s troubles began with his right hand, followed several months later by his left hand. In May of 2013, 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. Later in the summer, Aiden’s neck began causing him trouble, and he now struggles to hold his head up on his own. Because Aiden is one of the first in the world with this diagnosis, there are no support groups at this time. This rare and fatal disorder claims the lives of its victims within a few short years.
After a visit to Children’s Hospital in Birmingham back in the summer, Dr. Davis placed Aiden’s name on the list for Magic Moments, an organization that helps make the wishes of terminally ill children come true. Aiden’s wishes included 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). During the 2013 football season, Aiden’s wish to meet the Alabama football team was granted. Aiden and his parents took a trip to Tuscaloosa to meet Coach Nick Saban, A.J. McCarron, and the rest of the Alabama football team.
The day before the family’s visit to Tuscaloosa, Aiden’s dad received a call informing him that Aiden’s wheelchair was ready for him along with a wheelchair accessible van. On the morning of the trip to Tuscaloosa, Aiden and his parents made a stop at Griffin Mobility in Hartselle. Aiden’s wheelchair was ready for him at just the right moment and made his visit to the University of Alabama an even better dream than he had imagined.
Because Aiden has many needs, caring for him is often challenging. Thanks to generous support from friends, family, and the local community, Aiden’s parents were recently able to purchase him a new bed that has greatly improved his parents’ ability to care for him in a better way. At this time, Aiden is unable to walk, hold his head up on his own, or use his hands efficiently. In fact, he has very little ability to control his right hand. Recently, too, Aiden has begun experiencing trouble speaking plainly.
We want to give Aiden the best chance he has and take care of him in the best way we can even though there is currently no cure for the cruel disease that he suffers from. Thank you to friends, family, and strangers alike for the continued support of Aiden and his family. Each one of you has helped to make his world a little brighter.