Kirsten's Hydranencephaly was found by ultra sound 5 days before she was born, at that time the Drs. weren't really sure what it was, but knew something would be wrong. So when she was born they whisked her away for tests and such, five days later she was home with me, with the simple diagnosis of hydrocephalus, but was told she would be lucky to live a week as she only had 10% of her brain mass. Four weeks later Kirsten had a shunt put in to control the hydrocephalus, and the Neurosurgeon gives me the new diagnosis of Hydranencephaly. Our Dr. told me how fatal this was for my daughter, and told me that she would only live a year, To me that was an improvement, because just a month earlier I was told a week.

Kirsten has developed many problems. She is legally blind, although she has learned to use what vision she does have very well. She has CP., and orthopedic problems. She is on medications for her seizure disorder, for asthma, and for hypothyroidism. Kirsten is fed mainly via G-tube, but gets some goodies (such as ice cream, and pudding) by mouth.

AS FOR KIRSTEN NOW........Well she has showed all the Dr, that they are seldom right. She is now 7 years old. Very alert, happy, and has an attitude much like any other 7 yr. old. She stands in a stander, and sits in a wheelchair for mobility. She loves any movie that is Disney, and laughs when she hears the Disney introduction.

She is learning to use a computer at school, like most 1st graders, and shows her teacher the attitude when she doesn't get to work the program she wants. Kirsten is mostly nonverbal, but can say Hi and will definitely let her presence be known when she wants attention. Kirsten is very playful, and loves to hear the dogs barking at each other, and anything musical (especially piano music) She takes breathing treatments twice a day as a preventative for her asthma, and we have to stand over her to ensure that she keeps her breathing mask on (if we leave the room she takes it off and then laughs).

Kirsten has taught me a lot in life. She can't walk or talk (in actual words anyway) but she never complains. She is very happy and the only time she isn't is when she's really sick. He smile can light up any room, and has gotten me through a lot of hard times.

When I was given the diagnosis of Hydranencephaly for her, I thought it was the end for us, I thought I wouldn't have her long, that is what all the information I read showed, but with research I was able to see that this diagnosis is not right. I have met many families with children who have hydranencephaly. And all these children are very outgoing and alert.

Aug. 1998: Kirsten has a baby brother named Noah

Oct. 1998 Kirsten can now say and use appropriately, yes, Mama, Hoddy (Holly), Dada, Hi, I la (I love) & an unidentified "bad" word.

WAY TO GO KIRSTEN!!!!!

Kirsten died on December 2, 2005. She was 14 1/2 years old.