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My daughter Mya is 12 years old. She is the most beautiful girl in the world with the personality to match. Mya was born with several congenital defects. Some of those required surgeries. She has had a total of 7 surgeries including open heart surgery for a VSD and Double Outlet Right Ventricle, Tethered Spinal Cord, and Right club foot. Despite all the odd that were against her Mya developed normally and had a normal life until about age 6 when we noticed attention and behavioral issues and issues within school which at that time were diagnosed as ADHD, Oppositional Defiance Order, and possible Autism. At 7 we started to notice vision issues. At age 8 she was diagnosed with Epilepsy after her psychiatrist noticed a staring spell and referred us to a neurologist. That same year she was seen by a eye doctor at UVA in Charlottesville and he confirmed she had retinal deterioration and was going blind. On April 4th 2018 after her neurologist suggested we do genetic testing.. we found out the devastating news that Mya had CLN1 Late Onset Infantile Batten Disease a terminal illness that causes all the above issues, including loss of speech, loss of mobility, loss of ability to eat on their own, dementia, hallucinations, and eventually leads to death early childhood to teens. Based off her MRI her doctor estimated Mya may live to 15 years old but was not 100 percent positive and hoped she would live longer. Since diagnosed Mya has lost her ability to walk, she is cognitively delayed and has the mind of a 1 year old, her speech is delayed, she has expierenced 3 grand mal seizures.. all leading to regression, she is tube fed even though she does snack time to time, she expierences episodes of dementia and hallucinations that can sometimes frighten her. This is a unfair disease. It steals a child's childhood and life, and steals children from parents. There is currently no cure, but a few clinical trials on the works. Mya is fully dependent on me. I am by herside 24/7. I do all I can for Mya. She is happy and loves Jesus, and her mom, dad and brother very much. She is a precious girl and blesses all those who are lucky to meet her.
