Family Stories; Kayleigh Moran

Methlymalonic Acidemia, mut 0, 9/22/99

My name is Kayleigh Moran and I was diagnosed with Methylmalonic Acidemia (MMA mut-0) as the result of newborn screening. Since I was fortunate to have lived in an area where newborn screening is common, my doctors and parents were able to manage my diet and control my MMA levels.

Up until I was 3 ½ years old I was eating on my own, but it just got to hard to continue eating. I was in and out of the hospital in May and June and finally got a G-tube in July. Since then, I have been out of the hospital (other than a few minor issues with my tube). As a result, I have put on a lot of weight and I am much healthier.

I am currently on a diet of 24 grams of protein (1 gram of protein per kilo of body weight) and usually drink about 8 to 10 ounces of water and 8 ounces of chocolate milk a day. I also love to snack on pretzels, potato chips, nachos, and marshmallows. My favorite foods are Campbell's spaghettio's, waffles with butter, yellow and white rice, and pasta with butter and old bay seasoning. I also love McDonald's happy meals with nuggets, fries, and water. My formula is a combination of 100 grams of Propimex-1 powder, 30 grams of Pro-Phree powder, and a crushed calcium tablet, and all my daily meds (sodium bicarbonate, carnitine, zinc, iron, selenium, and vitamins), which mom and dad (and sometimes my sister Meghan) pump into my belly. They bolus feed me three times a day with about 8 ounces each time. Fortunately, I don't get overnight feeds right now. My mom also gives me two shots a week with epogen.

Developmentally, I am on the small side but that is not that big of a deal. While my brother is very big, my sister is very petite for her age. I've had some great teachers in pre-school and especially love Miss. Amy, Miss. Erin, and Miss. Krista. They all taught me so much and took such great care of me. Now I go to 1st grade and love to go there with Ms. Brice. Mentally, I have developed wonderfully and have no delays as a result of having MMA. Actually, I think I am the smartest one in the house because I always get what I want.

I have been Irish dancing now for over a year and I want to be as good as my sister Meghan some day. I've also been learning how to play the piano and love to sing and dance.

I have been blessed with a very big family and a whole lot of friends who love and care for me very much. (This is true for especially Shaina and Aunt Kerry.) Every year they all get together and have a benefit to raise money so Dr. Venditti can find a cure for people like me. Please say a prayer for me so I continue to do well until Dr. Venditti is done.