At one time considered a "painless" terminal disease that is indescriminate in its victims age, race, sex or nationality, Batten Disease is a disease that carries with it a long course of chronic illness, blindness, regression, assorted deficits, the painful realization that things are changing and quickly and for the family, the realization that life will never be the same again. By the time the symptoms hit, most families have already had their children, in some cases, 4 or 5 children in their primary school years and one by one 2 to 4 of them start to loose their sight, get clumsy, and it all hits the fan. As teenagers, they are vegetative and usually by early adulthood, they start dying off, one by one.
My Angela is a child with NCL (Batten Disease). She has the Juvenile type which means she will probably live into her 3rd generation but to what quality of life, no one knows. Already, she had numerous physical and mental delays and handicaps. She lives in a group home for young adults (there are 4 in the home) close by and we have a support system that can't be beat. But still the pain of separation and grief is there.
She graduated Robertsdale High School with her peers at their request. She walked across the podium with her classmates and received a standing ovation and attended her prom escorted by the football coach who had lost his arm to a shark attack the summer before and went on to win the Iron Man Triathalon the following fall.
She has known all the fun there is to be had in life by her classmates and has experienced their activities with them and they have enjoyed her as much as she enjoyed being with them. For all those memories and pleasures, I am most thankful. Our Department of Human Resources was supportive and encouraging and stayedin touch throughout her life and whenever I had a question, I felt free to call. Today, she has a wonderful caseworker whom I depend on a great deal since I am not in Alabama.
In the cruelest contrast, someone I know in another state has a 2 year old who is suspected of having developmental delays, etiology unknown, This child had a seizure this past Christmas Day and was taken to the hospital at the parents request to be checked out. The nightmare began. The baby girl was admitted and two days later, while still being breast fed, was forcefully removed from the parents in the hospital, renamed and readmitted under an alias. The parents are fighting so many petty, bogus charges that it's unbelievable. The original charges against the parents were disproven by those very medical personnel who made the charges in the first place - that of failure to thrive, rickets, several other issues. Upon further examination, these accusations were proven to be wrong. So, they headed off in a new direction, and in a new direction, etc.
Next week is the trial and this family is profiled and already predetermined by the department of human services to not get the baby back. They have already told the foster father (stay at home dad) that it's ok to bond with the baby and plan on adopting her. He is already calling her "his daughter" and being quite ugly to the baby's mother when their paths cross during visitation days.
The psychological evaluations for both parents are ok, nothing is wrong with their parenting skills, however, their "perception of reality" is not what the department approves of. Whatever that means.
The parents (39 and 65 years of age) have been told that things don't look good for them at this point. Is there anybody out there who has any ideas?
These physicians lied on record and off. There is evidence.
The social workers and Guardian Ad Litem are working together to have this child permanently removed, there is written proof.
The other players in this travisty are just as biased and hateful and equally determined to have this child adopted by this particular family with whom she is being fostered.
I will watch carefully for your response. I hope somebody has some words of encouragement.