Richard's Story:
Sent: Apr 23, 2000
We are Germans, living in Germany. This is the fathers statement. I write this hoping to encourage others, or to get some feedback or encouragement for our family and maybe to share my worries, hopes and fears with others going, to go or already having gone, through similar problems.
Richard was born in January 1992 through a cesarean section after a problematic pregnancy (almost lost in th 4th month), about 16 days after the expected birth date. He didn't breathe spontaneously.
We noticed his first cafe-au-lait spot at the age of a few month, on his belly about 1/2" below the bellybutton. My wife suspected what it was, she is a medical doctor, but she didn't tell me then.
For the next three years, the pediatrician didn't state anything special during the medical checkups, shots, etc., Richard was within the standards.
He grew bigger as a nice, friendly and sunny little boy. In fall 1993 his brother M. was born five weeks prematurely.
In January 1993 my company sent me to the USA for a project, so we took the chance to live there as a family for about two years. The new environment, the heavy workload and the fact that we tried to raise the children bilingual, may have caused that we didn't notice deficiencies in Richards pronounciation. His motor skills in drawing were poor, we thought he might be lefthanded. But he was also interested in everything. He wasn't able to write his beloved figures so he built them with duplos, he climbed, played with other children, besides German spoken within the family he started to speak fluent English at the age of three, attended preschool and Sunday school, had friends, loved to look at picture books, to listen to songs or fairy tales - so everything seemed rather normal.
By that time we had stopped counting his cafe-au-lait spots. We returned to Germany when he was four . The pediatrician told us, his motor skills were retarded, his speech hard to understand. We didn't believe him, because he was too impatient - with our son AND with us. Nevertheless, we took Richard to logopedic exercises weekly and let him exercise at home daily.
When Richard was five years old I noticed a peppercorn-sized node in his arm on the biceps. This time we asked the pediatrician directly whether he thought of NF. He nodded, and told us, that there is nothing one can do, but wait and observe, that no prognosis could be done, and no action needs to be taken. Several month later, we realised, that the University hospital in our neighbour town had a childrens endocrinology departement with a doctor specialised in NF cases. We had an appointment with her, and since then at least diagnostics was assured, we felt that our fears and problems were acknowledged and taken seriously. We had a complete set of tests and diagnostics, EEG (Electroencephalogram), EKG (Elektrokardiogram), MSR (Magnetic Spin Resonance) [MRI] Tomography [CAT scan], Ophthalmologist, Ears, psychological, concentration and motor tests. Apparantly (and we are grateful for that) Richard seems to have a very mild form of NF. Besides the cafe-au-lait spots, a very dry skin and the predisposition of not being able to concentrate and motor retardation he is OK. He went to school normally, with six and is in grade two now. His handwriting is horrible, we need a lot of patience to have him write his homework without spelling mistakes - it can drive you nuts to see that there are 6 spelling mistakes in five lines which just had to be copied from the textbook, but I'm afraid that we have to accept, that he really might not be able to concentrate. On the other side he is one of the best in maths in his class, and likes going to school. He recently started to read books on his own, likes to write texts or play games on the PC, we go swimming, skiing, riding the bicycle, so we do everything with him what you expect an eight year old to do. A year ago he started to attend Tae-Kwon-Do and took the exam for his yellow belt last December, which made him so proud and us so happy.
We like to do all these things with him, but sometimes it is very disturbing that in all we do we think about how this specific activity helps him to develop normally. Like not riding the bike or going rollerblading because it is fun, but because it trains his motor skills. The permanent pedagogic backthoughts often make us feel guilty.
Richard knows about his spots, but doesn't know that they are correlated to a threatening disease. We will have to tell him, the latest, when he will have to take the decision to have or not to have children. Besides our family nobody knows about Richard's handicap. We didn't tell it to friends, teachers or neighbours because we do not want him discriminated in any way in school or anywhere else. We do not believe that the knowledge about his disease in school would do his evolution any good. What we think and hope we can do is to support him in his tasks, so he can learn to handle them by himself.
We certainly compare Richard to his brother M., 21 month younger, in grade one now, who is remarkable gifted and probably too high a standard to compare with. M. skiis better, rides the bike better, swims better than Richard. They are glad that they have each other, and so are we.
We know that no prognosis about Richard's future can be done and we worry about that. For the moment we are grateful that he can live the life of a normal little boy.
Mehr / Added May 2000