|Family Story – Cindy X.|
|Hi, everybody. My name is Tad. Firstly I should say I am fortunate. I am fortunate to get the opportunity to join the university, where I met my girlfriend, who became my wife 10 years later. I am fortunate to get my present job as a petroleum geologist after I got my PHD degree from RIPED, where I met a lot of good friends. I am fortunate to have a beautiful daughter, Cindy, in 2012. However, things changed from the day I received a call, which told me the results of my daughter’s lab test. The doctors suspected my 20-day old daughter to have PA. Looking at the cute baby, we all doubted the results. But we went to a doctor the next day, and did some normal lab tests. According to the tests result, the doctor didn’t think Cindy has PA. Then we went back home, with a burden unloaded.
But after that day, my wife got nightmares nearly every night. I have to say, I began to believe the saying of mother-daughter-one-heart. After one week, we decided to do some more professional tests to confirm the situation. About one months later, all the results reflected that Cindy do have PA, which is PCCB in subtype. The result shocked us, and even the doctor. She said she never see a PA baby in such a good condition during her career. Then we began to give her special diet with XMTVI Analog formula and SigmaTau L-carnitine. In the beginning we know little about PA, so we cut off every milk including her mother’s milk. What a pity baby and stupid parent!
I want to say I am fortunate again, thanks the God. We then met a professional doctor who told us how to feed Cindy. Before that we suffered a lot, even Cindy had to be sent to PICU once when she was 1year old. After that, Cindy began to sit, walk, talk at normal age. But then, things became worse, the XMTVI Analog was forbidden to sale on Mainland China. We have to change into another formula, OA1, which is difficult to buy in China. During the period, I joined in to an PA organization in China. We talked a lot there and learned a lot from each other. There are totally about 134 parents with PA or MMAW kids. The organization is really awesome! And as you all know, as most of PA kid, now Cindy begins to dislike the formula and her food, she wants to eat meat. She is now still in the hospital for the past 20 days eating less. So I want to change her diet according to my self’s knowledge, for we cannot get more suggestions from our doctors any more. I will add more formula with little protein but high energy and other minerals.
Now I am in the USA to do a co-research program leaving my family in China. One of the reasons why I choose to come here from such a long way and in such a critical time for my family is that I want to learn something about PA here in the USA