Jordan Kubczak

The story of Renee'

My son Jordan began getting sick at the age of 12. We where in and out of the hospital for many years the Doctors could not figure out what was wrong with him. They did everything from TPR & Lipids to a G-tube and IVIG, at that time he only weighted 45lbs. His liver was enlarged and he was not growing. We didn’t know at one time if he was going to make it he was so sick. Finally when he was 14 one Dr did DNA testing and discovered that he had a Rare Blood disorder called IPEX. He was only the 5th boy in the country to have this and lived past 3 1/2 yrs old. He had a BMT and is now 20yrs old. Thanks to one DR and technology.