Our daughter, Helena Margarita, is a living, breathing little miracle child.

When she was born it seemed that she was reasonably healthy, but it soon turned out that she was anything but.  She wasn't reaching her developmental milestones; it was a family's worst nightmare come true ; but nothing like when the doctor gave us the news.  

Our daughter has a rare neurological condition called hydroencephaly.  Spinal fluid is filling the cavities and recesses of her brain, taking away any chance of her ever having a normal life.  It causes seizures, strokes, and other serious problems.  At the age of four, our daughter is unable to walk, talk, or even eat on her own: she is fed by a tube, either in her nose or in her stomach.  She also requires oxygen whenever she gets sick (which is often, I'm afraid).

It is a terrible, horrible condition.

Our lives revolve around Helena's care.  We cannot go on lengthy vacations because of her medication schedule; one has to be with her at all times, in case something were to happen (and it often does).  Now that she is older, these problems are occurring with alarming regularity.  Just a few months back, Helena had pneumonia for the umpteenth time; the doctor has said if she has it again she may end up having to be on oxygen 24 hours a day, since her lungs have gotten so weakened.

Then you take into consideration the seizures or the threat of strokes.  She's already had more seizures than one can shake a stick at and she's had at least four strokes in her life ... and she's only four now.

Doctors don't think Helena will live to see the age of six.  Her illness is that serious.

It's been awfully hard on me, my husband (Omar), and our other two children Octavio (11), Mara Graciela (8), and Mira Elise (7).  (The other kids are healthy; none of them have inherited what their little sister has, thank goodness, but it's still very rough on them, to see their sister suffering like she does.)

Even with all that she's faced in her young life, Helena is one of the most happiest, sweetest little girls we happen to know (of course, we aren't prejudiced!).  She is always happy, laughing, or smiling; the only time she cries is when she's sick.  This is how we know she isn't feeling her best, when she stops smilling, laughing, or being happy.  She is very good at making her feelings known, even though she is nonverbal.

Just keep us, and especially Helena, in your prayers when you go to bed tonight.  We would give anything to see our daughter run, talk, jump, or even walk!  Just thank God your children are healthy; it is funny how health (or healthy children)  is (are) often taken for granted  until one of your own becomes sick or disabled or is born that way!  Any prayers are greatly appreciated!  Thank you and God bless!

~Aurora Mendocino, Surprise, Arizona.