Make A Child Smile

Alayna's Story
written by mom Annette

Alayna was born May 11, 1995. She was a healthy 8 lb. 13 oz. baby. She did not have any medical problems that we knew of. She had always been the normal curious little girl.

However that all changed rather quickly. Alayna was diagnosed in October of 2005 with Neurofibromatosis. At that time she had two small tumors in the right side of her brain. We were told we would have to watch them and an MRI would be done routinely to monitor them. Her only obvious problem at that time was Migraine headaches.

In 2007, Mid February, she began having problems swallowing and had to cut her food into small pieces to avoid choking. In the evenings we would notice that her speech would change and at times you could not understand what she was saying. I immediately thought there was a problem with her NF. We saw her neurologist and he thought it was side effects of the medication for her migraines. We began weaning her from that medication. As we began decreasing her medication her symptoms began increasing. She then began falling for no reason. On March 11th she fell and wasn’t able to move her legs for about 15 minutes, then after resting she seemed to be fine. I called her Neurologist and wasn’t able to reach him that afternoon. The next day around 1:30 p.m. she fell again and this time was unable to move for about 30 minutes. Her neurologist called, and told me to bring her to the ER.

After many, many tests, on Wednesday, March 13th she was diagnosed with Myasthenia Gravis (an auto immune disease that affects your muscular system). This disease normally effects the population of women over 40 and men over 50. They tell me her chances of getting this disease was 1 in 100,000. She is the youngest patient they have treated her at UVA to have MG. This began the long road we have been on since. Our hospital stay at that time was five days. We began giving her medication every four hours 24 hours a day. We went home for a week and came back to do 5 days of IVIG immune therapy. We completed that and went home for another week.

Alayna got very sick and was admitted back into the hospital on April 10th because she had gotten Aseptic Meningitis from the IVIG treatment. On April 12th Alayna went to surgery to have her Thymus gland removed. Her chest cavity was opened in the same way open heart surgery is performed. After she was better from her surgery we did a five day treatment of Plasma exchange. Alayna was still not responding to any of the treatment she had all the symptoms she had previously. She was very weak in the afternoons and she was still only able to eat very soft foods which basically consist of ice cream, soup, mashed potatoes, and applesauce. She had lost sixteen pounds. We left the hospital on May 3rd. She was glad to be back at home, however it was very short lived.

On May 14th I took Alayna to her local pediatrician and she was diagnosed with a sinus infection. On May 16th around 5:00 p.m. she began trying to cough up some congestion and was unable to clear it. I tried to suction her and was not having any luck; she then needed her oxygen started. I called 911 and they rushed her to our local ER. Her doctor’s at UVA were contacted and we were in the process of getting her back up there when she was not able to breathe and she was put on the ventilator and flown to UVA. She has pneumonia and has been in the PICU ever since. They have begun another round of plasma exchange and added another medication to her list. We are hoping they will start weaning her soon.

Alayna has been such a trooper through all this. For whatever reason, she just has not responded to any of the treatment. Hopefully things will turn around for her because this will be going on for the rest of her life.