I’m Daylon, I’m 2 years old. I’m in Birmingham, Alabama. I was born full term via C-Section, and at 3 months, my mother noticed that something wasn’t right, I wasn’t meeting any of my milestones. So she voiced her concerns to the pediatrician. My mother was then linked up with Early Intervention(EI) for an evaluation. We then found out that I was behind on my milestones. My mother was then instructed to go see a neurologist for evaluation. Once my mother got in with the neurologist, they tested me for a muscular disease called Spinal Muscular Atrophy, that somewhat devastated my mother after the doctor explained the disease. But thank GOD that test came back negative. I was tested for other conditions only for those to come back negative as well. The doctor ordered numerous of scans only for them to come back as well showing no abnormalities or signs of injury to the brain.
At around 7 months my mother was then sent to a rehabilitation medicine doctor, he then evaluated me and told my mother to bring me back when I turned a year old. My mother took me back when I turned one, and she was then told that I have Cerebral Palsy, and not to pay attention to any of the normal scans that I had taken. All the doctor could say was I give that diagnosis because of the high muscle tone, which is called hypertonia. I was then prescribed Baclofen to help loosen my muscle tone.
At 16 months I went in for a modified swallow study, because my mother noticed i wasn’t gaining weight! During the test my mother was told that I was silently aspirating, which can be very dangerous. so for there i had to be immediately admitted to the hospital to have a procedure to get a feeding tube inserted into my stomach. Now my mother had to go through a life altering change. I was hospitalize for 4 days so my mother can learn to feed me through a feeding tube.
At 17 months I started having seizures, that morning scared my mother to death, I was then rushed to Children’s Hospital of Alabama where I had to be intubated for 24hrs because my heart rate was dropping. Now thats another condition that my mother had to live with me having epilepsy. I was then put on another medication called Trileptal to control my seizures.
I was referred over to a neurologist at Children's Hospital in Cincinnati,OH for a second opinion and further testing regarding my condition. My inital consulation is set for March 30th 2018. But my mother is responsible for my expenses, we need $750 for the doctor to even see me, that fee does not include my travel and expenses while in Cincinnati. My mother is not sure how long we will have to stay.
So would you be willing to help get the answers we need? Any help would be greatly appreciated.
- Tony Christon-Walker
- Don Solomon
- Mary Catherine Quinn
- Tiffiny Jackson
- Sakina Skipwith-Smith
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