"My Little Sister Maggie Has Costello Syndrome"
by Callie Ernst

My little sister who is two and a half has a syndrome called Costello. A syndrome is a set of symptoms and signs that indicate a presence of a disease, mental disorder, or other abnormal condition. My sister does not have a mental disorder, she is really just different. In the syndrome there is cancer, but my sister does not have it. This doesn't mean she will never have it, it means she doesn't have it at this time. On the internet my mother found Costello Syndrome. There is a girl in England who has the same syndrome. The girl's name is Helaina. Her family sends our family post cards. Our family gets a lot of data from them.

In the syndrome there is something called cardiomyopathy. The word cardio means heart. Cardiomyopathy is when the wall around the heart thickens which isn't a very good thing. Now we know it's in the syndrome so the doctors can look for it when my sister goes to the doctor's office.

Sometimes my sister has to have surgery, in fact just recently Maggie had to have surgery on her legs and had to wear casts on both legs for six weeks. The casts are all the way up to her thighs. Then when six weeks have passed the doctors can put on walking casts. Walking casts are casts that you can walk in.

My sister Maggie has had other surgery also. She had to have surgery on her stomach because she wasn't drinking enough formula. What they did was cut open her stomach and put in something like a balloon. Then the doctors put a tube in her stomach with a little plug you can see.

At night we have an electronic machine. Every week Chartwell Company drops off small packages of tubes in boxes and every night my mom or dad hooks the tube to the plug. Then there is a little bag that hooks up to the tube. My mom or dad put Pediasure into Maggie's stomach.

The syndrome affects our family in many different ways. We've had sad, happy and frustrating times. Sometimes I get frustrated myself because Maggie can't talk. Then I think Maggie can't talk but then I come up with an idea like I can still talk to her even though she can't talk to me. Before my sister was born I had four brothers, but now I have four brothers and one sister. My sister Maggie needs to know some sign language. Because of the syndrome she might not learn how to talk until she's four or older but the doctors don't know. It's really just a guess. The things Maggie can do in sign language are "turtle," "cow," "duck," "bird," "rooster," "teddy-bear," "horsy," "bunny," "doggy," "Barney," "sleep," "telephone," "fish," "no," "and "yes" which are just a shake and a nod of the head.

I've learned a lot from my sister. For example I've learned sign language, and that there are a lot of people out in the world who have syndromes like Costello that can't be treated because they don't have enough money or don't even have a home. So they can't pay for treatment. There are some people who don't have homes and their child has a syndrome that the parents don't know about and that can cause bad things to happen in the syndrome is not treated. Maggie is different and the same if you think about it because of the syndrome she is different, but Maggie as a child just like others and just because she has this syndrome it doesn't make her bad or strange. It just make her different and different is GOOD!!!!!!!!!!!!!!!