I am writing to tell you about a very special little girl and ask you to help her. Marysue is now ten years old. At the time everything happened she was 9 years old. Marysue loved going to school, running and playing with her friends, singing in the the children's choir and playing hand bells at church.
On November 20, 2013, received her annual flu shot. Then, on the evening of November 25, 2013, she played freeze tag with her friends, ate her dinner and went to bed. Marysue was fine when her father and I turned in around ten that night. The next morning, she did not get up at six as she normally did. I went in to check on her. When I called her, she did not respond. I attempted to wake her and could not at first. Finally, she opened her eyes but she did not speak to me which was not normal for her.
I immediately called Stephen (her father). We called 911; they sent an ambulance. After they evaluated her, they told me to get in the ambulance. I had to ride in the front. I later found out that on the way to the hospital she had a seizure. Later, we were told that during the night she had a previous seizure with lack of oxygen.
My wonderful daughter was later diagnosed with white brain matter disease also known as A.D.E.M.
Marysue is now nonverbal, confined to a wheelchair/hospital bed, is primarily eating via a g-tube though we are now able to start feeding her stage two baby food by mouth. The only voluntary movement that she currently has is using her head and some gross motor in her legs and arms.
We are trying to raise funds to build her an accessible bedroom and bathroom to improve her life. Our house is very small and her hospital bed is in our living room because the doors in our house are too narrow to accommodate her bed or wheelchair. When it is necessary to move her; say, to the bathroom, her daddy has to carry her. Her daddy should not be lifting her as he has shoulder and neck problems which were scheduled for surgery right after that horrible night which, of course, had to be cancelled as he is only one who can lift her. By lifting her has caused him many days and nights of pain.
We are also trying to raise funds to purchase a wheelchair van. If we had this, we feel we could possibly get one of our neighbors to put her in her wheelchair which we (her grandma or me) could wheel the wheelchair into the van thus providing me and her grandmother the ability to take her for her doctors and relieving her father having to carry her and fit her in her car seat (an infant car seat) which is getting more and more difficult to achieve as Marysue now weighs 70#.
A trust fund has been established at Chase Bank under the name of Marysue L. Grivna Trust Fund.
Trust was established at Chase Bank, N. A., W. Waters Avenue, Tampa, FL. Account is managed by Messrs. Donald Barker and Scott Hessmeyer.
Any assistance you can lend will be greatly appreciated.