Four-year-old Freedom Wilson and her parents Mike and Kennedy Wilson, of Delmar, Del., along with sister Faith, joined us yesterday to talk about Freedom’s amazing story.
After a difficult pregnancy, the Wilson’s were ecstatic to welcome a healthy baby girl into the world. However, shortly after Freedom was born, a nurse happened to notice her eyes were slightly cloudy.
Three days after Freedom was born, Mike and Kennedy found themselves at Johns Hopkins receiving news that no parent wants to hear. Their daughter was diagnosed with an extremely rare eye condition called CHEDS II, which stands for congenital hereditary endothelial dystrophy.
The condition, which appears similar to glaucoma in that the eyes appear slightly cloudy, is caused by a build up in fluid in the cornea caused by unformed pump cells.
Kennedy says she was surprised when one of the first questions doctors asked after the diagnoses was if the couple was from India, which they are not. Not a lot of people in the United States have heard of CHEDS II, but it is surprisingly prominent in India.
Doctors informed the Wilson’s that the probability of Freedom being completely blind was fairly high and the Mike and Kennedy feared that their daughter would never be able to drive, read or lead an independent life.
The family says they turned to the lord and the wonderful new opportunities at The Wilmer Eye Institute at Johns Hopkins for help. Doctors there put her on a daily medication that is typically used to dry up the cornea prior to eye surgery.
Thanks to this treatment, Freedom is not completely blind and Kennedy says most people who see her do not even realize she has a condition. To better shed light on Freedom’s condition, the Wilson’s brought a pair of goggles for Jimmy and Lisa to try on.
Kennedy likens Freedom’s sight to looking through wax paper. She can see a lot of shapes and colors, but has trouble when it comes to fine details. Freedom sometimes uses a cane in new environments to help her maneuver, but as her father points out, she usually acclimates quickly and ditches the accessory.
Freedom does not let her challenges get in the way and spends her days like any other fun loving 4-year-old and even recently fulfilled her dream of playing tee-ball.
The Wilson’s were thrilled to find out about a new technology called eSight. The tag line on the Canadian company’s website describes the technology as, “electronic glasses that let people with vision loss actually see!”
The glasses take things that are far away and bring them up close to the wearer. Freedom could sit with her family and watch TV instead of having to sit just inches away from the screen with the help of these glasses.
The Wilson’s have never given up on the impossible and are hopeful that this new technology, which they will recieve June, 27, could be the predecessor to a device that could help Freedom someday drive.
The Wilson’s advice to any family in similar a situation is to keep your head up, trust the Lord and keep pushing forward.
Freedom also played t-ball with Jimmy, her sister, and her Dad.