My husband, Bruce, and I have a son, Nathan, who has also been inflicted with Batten Disease CLN6. Nathan was born on 10/7/1994. He lead a happy early childhood as all boys his age do until at 5 years old he began losing his central vision, and within 6 mos. at age 6, he had his first seizure. Nathan is almost 21 years old now, defying the normal lifespan for his type of disease. He has lost much of his mobility, and is blind and non-verbal, but otherwise healthy. He does not require any feeding tubes and still eats(pureed foods) and drinks with assistance. He has always been strong and has fought a very hard fight with great reserve. He continues to make us, as parents, beyond proud. So I pray that your endeavors in research will come in time for Charlotte and Gwenyth to be cured of this awful disease, and with realistic expectations, we still hold hope for our son Nathan. Please note that any information we can contribute or anything else that would help in your research, please reach out to us, we will openly be available. May God Bless you all who begin this journey to finding the cure for Batten with the knowledge and endurance it will take.
Thank You, Christina, Bruce and Nathan Hoover
PS. May I also inform you, that my great Aunt and Uncle, Ruth and Wayne Zimmerman, had 2 of their 4 girls(who were born in the 40's) to be two of the first to be diagnosed with Batten Disease in the US. These two girls, remind me so much of Charlotte and Gwenyth, so you see, I have a more than heartfelt need to be part of this journey, so that the future children of my family will never suffer from this terrible disease again.