Mindy Says Oh Shaba to Niemann Pick

Mindy Fagan Story

Mindy is a beautiful 10 year old girl that was so normal up until half way through first grade. Then Mindy was between the ages of 2-4 and was very clumsy. But us as her parents thought she is just being a kid. All kids fall and get hurt. She also drolled an awful lot. But again babies do droll. Mindy was a very smart girl, she helped out other students in her class and even got student of the month in young 5's program. Then half way through the first grade her teacher came to me and said, "Mindy is not learning any more". I her mom said, "What do you mean". The teacher said she is not getting things that I am trying to teach her. So we had an IEP test schedule for her and they said Mindy is about two years behind and that she had Cognitive Impairment. That was very hard to except, we thought. Because of this happening, we knew we had to go to a doctor and find out what happened. In April 2006 we went to University of Michigan and seen a Neurologist and had a lot of testing done. She had a sleep study overnight test, and that result was that she had Narcolepsy. So we started seeing a Sleep doctor.

Around that same time Mindy was falling when she would laugh and we would say, "what are you doing trying to get attention?" So we let our Sleep doctor know and he said that it sounded like Cataplexy. Sure enough that was true. So, December 2006 Mindy was put on Provigil for Narcolepsy, then March was put on Imipramine for Cataplexy. Our sleep doctor still didn't feel good about this. So, him being a colleague of Dr. Patterson, and knew about Niemann Pick, he decided to test her for that. So Mindy was admitted because of sickness, and he said that I would be getting a call because he wanted to do more testing. So one day Mindy and her sister was at school and I started reading through the discharge papers and I noticed where he wrote what test he wanted to do, and it said skin biopsy for Niemann Pick Type C Disease. So me being mom I don't know what that means so I get on the computer and look it up. After reading, I knew that Mindy had Niemann Pick. She had 7 out of 9 symptoms and I called my husband just a crying and read it to him and said, SHE HAS IT. I was so scared.

So Dr. Hoban called and schedule the test and that was the longest 6 weeks of my life. When we received the call I knew in the doctor's voice that it was positive. So it was May 3, 2007 when we got the news. I just cried and cried and called a family meeting and let the whole family know. This news is the most devasting news I will ever hear I think. I thought cognitive impairment was hard, not like Niemann Pick Type C Disease.

Since Mindy has been diaganois, she has developed severe cataplexy, 10-15 spells a day. Grad Mal seizures, Vertical Gaze Palsy, Narcolepsy, Swallowing difficulites and has a feeding tube. We had the feeding tube put in December 2007, but since she has gotten it, she is finally eating good on her own. But we are keeping the feeding tube in case we need it. Mindy is still going to school full-time in a Special Education classroom.

This is the story of Mindy Fagan and Niemann Pick Type C Disease.