Marissa's Story

On September 2, 1998 I gave birth to the most wonderful little baby girl she was 6 lbs 7 oz she was 20 in long with jet black hair and big chubby cheeks she was so very pretty. My husband her daddy got to pull her out it was such great feeling he laid her on my tummy and she began to cry it was so weak and
cute I told my husband boy she is going to be a good baby with that little cry, ( little did we know ) the doctors said oh that's okay she is a girl they don't cry very loud but they did say she was a little yellow in color they check her over and 24 hours later we took are little girl home to meet her big sister Shelby and big brother Paul jr. about four days later I was
changing her diaper and saw blood I screamed for my husband and we went to the ER the doctor said she was having a female menstrual cycle he said some baby girls have them she bleed for five days , then that finally stopped and then she got such a bad rash on her little butt and in her month I took her back
to the doctors I told them what was going on and I said I was concern about her breathing it seemed she was having some problems and her hands were always backward, her cry was sounding weaker. He said her hands are turned the wrong way because of the way she laid for nine months, the breathing he
said was ( a girl thing) little girls breath harder but cry weaker. I said he was nuts I felt something in my heart I knew something was so wrong she was my third child and this was not right, after seeing seven different doctors and getting seven different answers all of them telling me I was being over protective she is fine. At two and a half months old I took her in for shots
that doctor ask me what was wrong with her hands and her head? I said oh nothing it's just a girl thing ( upset ) he then said he wanted me to take her in to get an EMG my husband and I took her on Friday Nov 20, 1998 for the EMG but the night before the test I woke up screaming from a night-mare my
husband ask what I dreamed about and I was crying and said I had a dream the the doctor told me Marissa was going to die. He said she is fine honey it was just a dream, the next day we went for the test 45 mins. later the doctors said I'm sorry your daughter has SMA type 1 she will only live a few months
two days later we had hospice. Within one month she just slipped away she stopped eating so we put in a feeding tube, then we got the suction machine, breathing machine. It was very hard for all of us on Christmas morning 1998 I was holding her and she looked right into my eyes smiled at me and then let out a little cough but the mucus got stuck in her throat and we tried to suction but nothing worked she passed away in my
arms with her daddy by her side.

We called her wizzer because when you took her diaper off she would wet everywhere her other nickname was pretty pretty she loved that her daddy would say ( you daddy pretty pretty ) and she would look at him and smile then I would say ( no you mommy pretty pretty) we would go back and forth and she
would move her little head back and forth at daddy and mommy fighting over whose pretty she was, she smiled so big when we did that. She loved her pooh doll she would hold it so tight that pooh went with her.