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Cheyenne Grace PDF Print E-mail

My name is Lacey Posey. My husband, Shannon, and I have 2 children, Cody and Cheyenne. Cody was born on Dec. 15, 2002. Cheyenne was born on August 31, 2005. She has GA1.

Cheyenne Grace was born at 1:03pm weighing in at a healthy seven pounds, 11 ounces and 20.5 inches. She was so perfect! Our well baby stay was uneventful and we were released after 48 hours.

About an hour after arriving home, Cheyenne was hungry. She wouldn't latch on right away so I waited a couple of seconds and tried again. The lights were off, so I couldn't see very well. Shannon came in to check on us and when he opened the door and the lights from the hallway landed on us, I could see that Cheyenna was blue. I handed her to Shannon immediately. He tried talking to her and moving her around to get her to breathe. When that didnt work, he began rescue breathing. I was on the phone with the paramedics. Cheyenne began breathing agin, but soon had another apnea episode. When the paramedics arrived she was back to normal. We took her back to the hospital for a complete evaluation. Cheyenne had 5 more episodes during the first 24 hours in the NICU. After beginning the anti-seizure medication, they stopped. As for feeding, I continued to breastfeed the entire time she was in NICU. She seemed happy, healthy...especially compared to the infants around her. She was by far the biggest one in there!

We were released on Sept. 8, 2005 after 6 days. Still no answers, but seizures were the biggest diagnosis and the nurse said that we would be receiving test results over the next few days. On Sept. 13, 2005 around 6pm, we got the call. Our pediatrician said that one of the tests had come back abnormal. He told me that Cheyenne had GA1. He told me all about what he had researched, but urged that I not look it up until we see a specialist. I agreed. The only metabolic doctor in Alabama happens to practice near us. She called that night and scheduled us to come in for a 2 day admission to have more tests run, teach us about the disorder and start her diet. I thought, "This is meat, no problem!" Wow, was I wrong!

Cheyenne has been hospitalized 19 times over these first 2.5years of her life for various reasons ranging from a simple cold to surgery to seizures. She has been seizure free for over a year now thanks to medications. She is currently receiving speech, ot, pt and special instruction from Early Intervention. She does not speak, but does use some signs and pointing to  communicate with us. She definately gets her point across! She is quite small for her age- only about 27lbs, but gets stronger everyday! She is very smart and understands what is being said to her, so that helps in her communication. She does have a feeding tube that we use only for formula- everything else is by mouth. Her medications include Carnitine, Phenobarbial, Riboflavin, Lamictal, CoEnzyme Q10, Panthothenic Acid, an iron supplement for chronic anemia due to her GA1 and Flintstone Vitamins. Cheyenne is allowed 14grams of protein per day and takes 20 ounces of formula (glutarex-1 and prophree) daily.

Cheyenne will start preschool in August. The preschool program in the local schools is for typical as well as special needs children. i think this will be a wonderful environment for her to really grow and help with socialization.

Shannon and I love to talk to others with children with GA1. We have spoken to several parents, educators and medical groups about our experiences with GA1 and we want to keep spreading the knowledge that we have so that someone else can benefit from early detection. Please feel free to contact me any time!

Lacy Posey

Cody, 5 years old, unaffected

Cheyenne, 2.5 years old, GA1

Montevallo, Alabama

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