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Hello loved ones, As the subject of this update suggests, we received the results of Jack's genetic tests this past Friday. He does indeed have Menkes Disease. Though we were hoping to learn more information about the course the disease will take in Jack's body, that information is inconclusive. Since Jack has now tested positive for Menkes, I (Katherine) will be having genetic testing done, hopefully this coming week. From there we wait another six to eight weeks for results, then talk with a geneticist to learn the implications of those results. As you can probably imagine, the past few days have been pretty rough, even though we knew in our heart he had Menkes. Though he is still a happy, content little boy, he has declined. His appetite has continued to dwindle, and his seizures have escalated in number, despite the increase in medication. Even so, we continue to celebrate Jack's beautiful smile and chatty disposition. He now "enjoys" vision and physical therapy at home (by "enjoy" I mean "tolerate"), and will soon start occupational home therapy as well. We hope to travel to Rhode Island in October and visit my mom's side of the family. It's nice to get out of the house where we can visit with family, and not get bogged down by the harsh reality that overwhelms us. Please continue to pray for Jack, and for us, as we continue to find our way through this life. Love, Katherine, Anthony, Jack and the pups (Sophie, Bailey, and Pecas) |