Infantile Arterial Calcification?

Last Thursday afternoon, I got a call from Dr. Figeroa about Kyle's heart condition. He said that he believes Kyle may have Infantile Arterial Calcification (IAC) - a genetic disorder rarely found. He told me of a test case in Australia where they tried an experimental treatment and had success recently (see link above). However, in order to confirm whether that is what Kyle has, we would have to send samples of Chris', Kyle's and my own blood to a Dr. Frank Rutsch in Germany for testing. The testing is so specialized and experimental that we would have to pay a very large fee for the testing and we would not get the results back for 10-12 months. If the tests came back positive for IAC, there is a medication that has been used ONCE in the treatment of IAC that Dr. Figeroa would want us to consider even though it would mean jumping through hoops since it's so experimental and has never been used on an infant so premature. They don't even know if the medication would prove helpful since it has only been used once before.

Chris and I have decided against testing for this disorder. We love Kyle very much and would find a way to pay the cost if we felt that some good would come of it. However, for one thing, literature I've found on this disorder says those who have it almost never live past 6 months (which means that we wouldn't even have the tests back by the time he died). Also, considering there have been no known cases of this GENETIC disorder anywhere else in either of our families and the references mainly to CORONARY arteries rather than pulmonary arteries in the literature I've found, we do not believe there is enough evidence that Kyle might have this condition. Plus, the information I've found regarding Pulmonary Artery Calcification, linking it to recipient twins in Twin-to-Twin Transfusion Syndrome, seems to sound more likely in Kyle's case.