Saturday, February 28, 2009

Seizures affect development of 19 years old young woman

Hi, everyone. Happy New Year. I started off the New Year with a cold and a seizure.

Margaret Gaer lives in West Des Moines. She's 19, a Valley High School student. Her seizures come about once a week, sometimes twice a day. No one is quite sure what causes them or how to stop them, but they have left her to function as a 4- or 5-year-old child.

My mom and I heard fireworks last night, but we couldn't see them in the sky. I love fireworks.

Gaer's mother, Sally, keeps a blog to chronicle how her daughter copes with the seizures. She posts the messages in Margaret's voice. This one's dated Jan. 1, 2008:

We go to Florida on the 10th, so my mom had to explain to me that we don't leave at 10 a.m., but on the 10th.

The Give Kids the World Village in Orlando is a place where "families do not have to worry about tomorrow." The trip was paid for by the Make-a-Wish Foundation, which helps children who suffer from rare diseases.

The Gaers, though, do worry about tomorrow.

The seizures started when Margaret was 4 months old. Doctors think they might be caused by a childhood vaccine shot. They didn't diagnose her condition until about two years ago, after researchers uncovered a rare and extreme form of epilepsy called Dravet's syndrome. It affects as few as one in 40,000 people.

The seizures used to last up to 25 minutes. One was more than an hour. Now they mostly come when Margaret is asleep.

Her parents do what they can. But Margaret still gets upset when she has to go to school. She doesn't handle new situations well.

Sometimes her father, Steve, takes her for a ride around town to look for animals. Margaret loves animals. And babies. And dancing. And the color green.

Her 19th birthday was Sunday. There was a party with cake, puzzles and games. Margaret got a green iPod.

But perhaps her most special gift arrived six months ago. Her name is Emma.

Sally Gaer had heard on "The Oprah Winfrey Show" that dogs can be trained to detect seizures and call 911 for help. So she researched the possibility and found 4 Paws for Ability, a training center in Xenia, Ohio.

She applied.


Oh, my! I'm so excited, I got my e-mail from Emma today. She has been working hard to be the best dog ever for me.

The blog post is from July, about two weeks before Margaret and her parents traveled to Ohio.

The Gaers had to raise almost $10,000 for Emma's training. Then they sent two of Margaret's undershirts - one that she wore while having a seizure and one not - each week for about five months. The experts say there's a 78 percent chance that Emma will be able to tell the difference and know instinctively what to do next.

Here's part of the e-mail to Margaret:

I have not had a very best girlfriend before, so will you show me the ropes? ... I know just what you smell like and bet I could pick you out in a crowd without ever having set eyes on you! Love and doggie kisses, Emma.

Margaret and her parents trained with Emma in Ohio. Nine days, six hours a day.

Day 2: Wow, Emma slept with me all night. I had a big seizure at 4:30 a.m., but she didn't really understand. She was very calm, but didn't do much else. I slept most of the day through class.

Day 3: I had another seizure today, at 6:30 a.m., and Emma didn't get it. ... It's just all so overwhelming, but I know she'll get it 'cause she's so smart.

Day 8: I have had a few seizures, one when Emma wasn't here, one when she was here, but she doesn't get it yet. Jeremy, the trainer, said it would take time before she will get it. ... Please pray she gets it, 'cause Mom is sad about it so far.

On Day 10, Margaret and Emma graduated. They traveled back to West Des Moines and got ready for a new school year. They have barely been apart since.

Making new friends has always been difficult for Margaret.

Few of the neighborhood kids or her classmates have wanted - or been allowed by their parents - to play with her. Those who did quickly outgrew Margaret.

On Friday mornings, she goes with other Valley students who are disabled to Target, or the mall, or the library. They learn how to open doors, say "please" and "thanks," and pay for things with money. Even in the group, Margaret finds it hard to fit in. She can't talk very well, and she has mood swings.

Sometimes when she gets really excited, she grabs other students' hands too tightly.

It's been six months since the 4 Paws graduation. Sally and Steve, who is West Des Moines' mayor, have worked tirelessly to help Emma detect seizures. Nothing has worked yet.

Friends and relatives sometimes post on Margaret's blog. This one's from Lisa H.:

Margaret, don't give up hope. I know that Emma will understand her job soon. And when she does, won't she be great for you and your mom?

The trainers will ask for Emma to come back to Ohio for an evaluation soon, at which time the Gaers could opt for a new dog. They say they might have to. It's important for Margaret that the experiment work.

Until then, Emma will stay by her best girlfriend's side.

She doesn't seem to care when she's squeezed too tight.


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