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The video for this interview is also available.
Miguel's Interview Contents:
Segment 1: Miguel talks about Andres' initial symptoms.
Segment 2: Andres being the first person in the family with the disorder.
Segment 3: How he talks with Andres and family about the disorder.
Segment 4: Andres' positive outlook and bright future.
Segment 5: The importance of social supports for families with the disorder.
Andres' initial symptoms were just the café-au-lait spots on his skin. Remember he was just a little baby. He wasn't walking at that point. And the next element that we found as a little unusual was his head size. The doctors regularly measured the circumference of his head, which was around the 95th percentile of normality. That means that 95% of kids have a smaller size head than what he had. It didn't mean much, but again, we were seeing new elements that just brought continuity to the worries that we had. "Well, what's going to happen next?"
It took a while for the next elements to show up and those were bumps on his skin. That happened when he was already maybe 3, 4, 5 years of age. At that time, we were not in Argentina anymore. We had moved through my employment and we were in Venezuela where his treatment was a little aggressive. They wanted to take X-rays all the time and we were worried about so much radiation. And he cried a lot during those doctor's visits and we just worried. And we decided that we wanted to come to the United States to have him checked here as already a little bit of information was starting to come out about NF at that time. And those café-au-lait spots didn't grow or become more numerous, but the bumps did, and they have not stopped ever since.
It wasn't, uh, clear if Andres' condition was a new mutation. Although the suspicion was that it was, there was a little bit of a, uh, possibility that my ex-wife, Andres' mother, had NF herself simply because of, uh, lots of freckles on her skin. Uh, that, uh, was, uh, worrisome because the genetic counselor, uh, then told us that she recommended we shouldn't have any more children. Andres is our oldest and, uh, I got very upset -- angry at the suggestion, and I said right there and then that I bet on life. Uh, I always thought of myself being very positive. Now I have a little bit more doubts about it but certainly I was at that, uh, uh, crossroads of, uh, my life. And, uh, Andres has two siblings: uh, a brother two years younger, and a sister six years younger than he is, uh, and they don't have NF.
So at this point we have concluded that Andres' NF condition is a new mutation which is not an uncommon, uh, occurrence for NF people.
When Andres asked questions about his condition of any type, we strived to try to keep it as honest and truthful as we possibly could. We needed to find simple words not unlike you do with any other subject and depending on the age of the kid. But we felt that it was very important to create a relationship of trust and also matter-of-factness about the condition because after all it was there and it was going to stay with him. So why try to hide it from him? That made it more of a natural element for him and therefore less threatening.
When Andres' siblings asked or wanted to know anything about NF, other than seeing him go to the hospital more frequently than they would, we just said, "He has these bumps and they need to be checked and to see if there are any bumps inside his body that are not visible, and that's why we go to the doctor and the doctors will say if something else needs to be done." And that's as far as we had to take it until they grew up, too, and they can understand and they would ask and we would tell them or they would ask their brother and Andres would tell them in their own language and now they have access to the same information. They know the Web sites, they have the publications handy, and they know what this all means to his brother and his future.
Andres is ready to turn 23 in 10 days' time. He is a young adult full of life. He graduated from Brandeis University a year ago and worked very hard to get a job when the market was starting to decline and he wouldn't give up and eventually got a job. He's working for a bank in the Boston area. Andres has just had his first evaluation and has received good opinions and they are happy with him. He is full of enthusiasm and NF has not interfered with his process of becoming an adult.
Having a child with NF, I feel that I have a lot to contribute to parents that are now finding out that they have a child with NF and it's to not hide from the fact. Really face it with some sense of reality and hope. I think that Andres' case is one that should tell them that it's not necessarily a disorder that will limit the capabilities or abilities to live a full life to their children. And the way to do this is by keeping themselves informed and speaking about it openly and if they have trouble doing so, to seek some help, to speak with the doctors, or to seek some counseling if that is necessary.
I find that it's not uncommon that a doctor that is oriented to the scientific aspects of medicine is not necessarily the most able to deal with the emotional and feeling issues related to a disorder. That's not uncommon with surgeries and that's not uncommon with major medical conditions. So I would encourage anybody that needs some additional support to go and look for it rather than keep it inside him or herself.
I feel I have a very strong message for other families with NF and the message is that NF is not an end in itself; it's full of hope and full of chances. We've been fortunate within the lack of fortune of having a child with NF, in that our son doesn't have a serious case that requires constant surgery or, at this point, has threatened his life.
Although we are aware that happens, it's not the majority of the cases. The majority of the cases are mild cases, and by conveying our situation and case, we hope that other families, as they find out about NF in their family, will be able to think that's it's not such a terrible condition per se, that it can be and it may very well be a more mild condition that can be lived with and have a prolonged, healthy life despite some inconvenience.