IS THERE A CONNECTION?

     Isabel was born the fifth child into an existing family of four boys. After delivering four healthy babies, it was quite a shock to be the mother of a little girl with such problems. Like most people, the thought of having a child with special needs never crossed my mind all during the pregnancy.

      After she was born, it took me about a week to accept the fact that my daughter had special needs, and probably always would. In the beginning, it felt as if she had died.  The little girl I had dreamed of, with pigtails and barbie dolls couldn't gag or even swallow her own secretions.  It is a life filled with suctioning, chest PT, hospitalizations and home nursing!      
   
      Over the past 14 months, I have become, like all the Moebius parents that I have met, Isabel's only voice.  I am her strongest advocate. All doctors, nurses, and therapists do not make a move with her unless I agree. I research everything she is going through, from
oral stim to pulmonary inhalers.  I try my best to stay on top of it all. Now that I look back and I am proud of what I have done.  She is getting stronger everyday and I felt that for what ever reason God sent Isabel to me, I was sure he was looking down at me and very proud of how strong I have been through all of this. I've done well.  I'm getting over the hurdles, life is getting better..........so I thought.
     
     So, what do you do when you find out just 1 year after your daughter was born that your oldest child has Tourette's Syndrome? Two months after that, you find out that your middle child has OCD and should be watched for the onset of Tourettes? How do I handle this. I am drained from Isabel.
     
     Tourette's isn't just about cursing either. Along with it my oldest son has OCD, ADHD and defiant behaviors. Why do I have a family like this. IS THERE A CONNECTION?      

     This question seems to be addressed quite a bit in the e-mail support group, but it seems almost crazy to think there is a connection between Moebius, a cranial nerve disorder and chemical imbalances.Looking at my children and all the other Moebius parents with siblings with the same problems it seems almost certain that there has to be a connection somewhere.
     
     Will we ever know? I hope so, I could certainly use some answers. Just some new information: the Tourettes foundation researchers think they have found part of a gene that could be connected to Tourettes. If this is true, considering most individuals with the syndromes have other problems,  this could possibly help lead to an answer for us Moebius parents. Sadly though, the rarer the syndrome, the less funding, the less research. I almost resent the Touretts foundation for being as big as they are.  I am jealous for Isabel.

     I hope this is food for thought for some of you out there and I would love to hear opinions. Does anyone else have a child with Moebius and is dealing with Tourettes in the family also? I'd love to hear from you.

Happy holidays!            Suzanne Silverman