This is Angie
Angie is 25 years old. She was diagnosed at the age of 2. I received the following letter
from Angie.
Hi; I wanted to say thank you for writing to me. I think it is a neat idea to set up a
web site for people with LMBBS. I know you feel alone for your daughter, but there are
many other people with LMBBS.
I feel my family never really understood the syndrome. The only thing my parents did
was take me to a special doctor in order to be diagnosed. That was twenty years ago
next December.
My parents always said that having this syndrome didn't mean anything
other than a label. They would take me to the eye doctor yearly to see how my RP was
doing.
I grew up in a small town, Newport, NH. I was the only one in the whole town in the
public school with a disability. This was during the eighties. I was tested because they thought that I was
learning disabled, and I measured "slow" every year. I was this way because I really
could not see.
I went to public school until 9th grade. I left with only a fourth grade
reading level. Then I went to Perkins for five more years and graduated there with a 10th
grade reading level. That was in 1992.
After I graduated, I went to a vocational training center for 4 months in Portland
Maine. After my 21st birthday I moved out of my parents house. I lived with another
family short term until I was able to find more permanent housing.
During this time (1993)
I started going to the rehabilitation center for a day program. I lived with The Dodge family, the first time for 3 years, then for a year I lived with another family. This family
then re-located and I realized that I had been in Claremont for 4 years and was not having
my needs met. I was not happy there anymore, so I told them I wanted to go back to live
with the Dodges, so here I am.
I'm doing a lot better here and I feel I am getting better services for my needs. I do
lots of things with my family here. Our community is Middlebury and we go shopping, out
to eat, and to the local library for my talking books. I have recently gotten a talking
computer to do my writing on. I'm using it now to write this letter.
The reason I got this is
so I can still communicate with people.
My sight has gotten much worse in the past couple of years, and they say I won't have
any sight in a few more years.
I am in the process of getting a job up here with people helping me from Rutland
Division For the Blind and Employment Associates in Middlebury. They are willing to find
me some kind of work using the computer and will adapt the job for me.
I would like your daughter to know that I have had this syndrome and vision problems
all my life. Things have not come easy for me growing up or in school. This is because
people didn't understand me or my special needs.
I have an extra finger and a heart murmur which led to a hole in the heart valve. Both
of these things were taken care of. They first detected the syndrome when I was two
years old(1974).
When I was a baby I wouldn't find things, my books or toys right away.
When I got a little older I would sit very close to the TV set. I was delayed in walking
and talking until I was 3 years old.
Other things I have had with this syndrome is the RP,
balance problems, dexterity problems, mostly in my hands because I was frostbitten at the
age of 6. I also have the weight problem which is almost under control now.
I was
classified as learning disabled. I have RP, macular degeneration, and cataracts. On top
of this I am far-sighted. I have only 3% vision in my left eye and can only see half out of
my right eye. I am totally blind at night, plus this time of the year is difficult for me
because of the sun reflecting off the snow.
I hope I have been of some help for your family,
Sincerely; Angie