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Connor G - The Boy Who Loves to Read Block Books
Starting Bid : $50.00 USD
Reserve price has not been met by any bid.
The Boy Who Loves to Read Block Books
Program: TUBB4A
Connor’s Story:
Connor is his parent’s perfect little guy. He is so cute and wonderful, inheriting his mom’s luxurious hair, and dad’s charming dimples. He is a tender soul and brings joy to all around him. When you read him stories, his eyes light up as he flashes the most wonderful smile. Brave, tough, and incredibly sweet, Connor was a calm baby and has grown into an adorable young boy. His parents love him so much it hurts!
The first few months after he was born, the doctors gave him a perfect bill of health, and likewise, everything was perfect in his family’s lives. Perfect until they themselves made the heartbreaking discovery that Connor had nystagmus, a high frequency trembling of his eyes that could signal a serious neurological condition. At first, doctors told his family not to worry, that the internet is full of worst-case scenarios, and that everything would be fine.
Nevertheless, they kept pushing to learn more, and every step of the way the diagnosis worsened. As they learned the hard way, the worst-case scenario is somebody’s reality and can indeed happen to you.
They now know, as confirmed via genetic testing, that Connor has TUBB4A-related leukodystrophy, an extremely rare neurological condition which results in hypo-myelination of the brain. This condition delays and impairs the development of Connor’s motor skills and results in the slow deterioration of his nervous system.
His parents were suddenly confronted with the horror that their perfect little baby would never be able to walk, never be able to talk, and might not make it to adulthood. All of this is because of a random mutation in just one base pair of his DNA. They were devastated and heartbroken.
However, they couldn’t allow themselves to mope around. Connor is still the same happy and wonderful boy who spends all day laughing and playing as much as he can and rarely complains or cries despite the frustrations he faces. So, they continue to live life to the fullest as a happy family, trying not to dwell on the looming challenges.
Meanwhile, they are doing all they can to help support those conducting cutting-edge research that may provide a future treatment and, hopefully, help restore Connor’s future.
* In 2024, Connor received his first dose of a personalized experimental ASO medicine discovered and developed by n-Lorem
