I think most of you know that I sent all of Tylor's medical records to Notre Dame for medical students to review. They are working on setting up a website for doctors to use when diagnosing rare diseases. This will hopefully help the doctors diagnose some of these diseases sooner. Because I can speak from expericence the testing and waiting for six years was really hard. And Notre Dame is very invested in NPC because Ara Parseghian, a former ND football coach, lost three grandchildren from this horrible disease. Beside review medical records from patients they are also working towards a cure!
I meet Dr. Haldar, a professor at ND, in Virginia at the NNPDF family conference. I told her I was willing to help in anyway possible. Shortly after getting home I contacted all the doctors who had seen Tylor over the last eight years and had them forward his medical records to me. After receiving Tylor's records I had a conference call once a week with a couple of the students to review the records I sent and to give them more information of his current condition. I sent them photos and videos to give them an idea of Tylor before his syptoms started and where he is now.
Just recently we were invited to visit ND to meet the students and see the research center. I was very excited but with just starting a new job I figured it wasn't in the cards. But I thought if I don't ask I'll never know.....well I have to say I work for the best company ever! They told me I should jump at the opportunity to visit ND with Tylor. We will be heading to ND on March 22nd for three days. I am so looking forward to this expericence. I will take lots of pictures and update everyone when we get back.