April 30, 2012

Our Notre Dame Trip

Our trip to Notre Dame was a very rewarding experience. On Friday, March 23 we had lunch with the Rare Health Exchange students.  I was amazed with how interested they were in Tylor and NPC.  I figured it would be Ty, Sy and I at a table by ourselves but that definitely wasn't the case.  The students were very excited to get to know Tylor.  It was a great way for them to see how the disease is effecting his swallowing instead of just reading it in a medical book or having another doctor explain it to them.

After lunch I talked briefly to the class about the struggles getting Tylor diagnosed.  I explained to them that some of the doctors Tylor was seen by didn't believe that there was anything wrong with him and sent us on way feeling ignored, upset and angry.   I stressed that listening to the patient or parent is very important.  They know their child better than anyone.  I also talked to them about how time is the enemy when you are dealing with a rare disease and listening to the parent could lead to a quicker diagnosis.  I spent time telling them how much we love Dr. Patterson and how professional he is yet very personable. 

After I was done the students asked questions.  They asked a ton of good questions and were very interested in how Dr. Patterson differs from the others we met on our journey.  I am impressed with how interested and involved this group of students are.  We also showed them pictures and video clips to show them how Tylor has progressed over the years.  They were very happy that I shared them.  It gave them a better idea of where Tylor was before the symptoms started to current.

Here are some of the students with Tylor and Sy

Well after I talked to the class we got to tour the ND campus while the students finished their school day.  Tylor got to meet the NPC mice.  The ones we saw were 70 days old and just starting to show signs of NPC like tremors.  They usually live to 140 days.  The ND campus is beautiful...we got some great pictures.

Touchdown Jesus

Friday night Dr. Halder, Pam (Dr. Halder's assistant), Will (her husband), Cleve (their son), Sy, Tylor and I went out to eat at a Japanese restaurant.  We had never been to a restaurant where they cook the food at your table...I know we don't get out much.  Anyway, Tylor loved it!!  Our chef asked anyone if they wanted to catch food in their mouth, Will said sure and caught it.  After that Tylor bent his head back and opened his mouth and he almost caught!!!
Tylor using his chop sticks

The wonderful student had planned on taking us to a ND baseball game but they were calling for rain so we went to the College Football Hall of Fame.  Tylor liked looking at the old uniforms and football equipment.  We even got to throw some touch downs and kick some field golds.  When we were down Tylor, Cleve, Aaron, and Will played football on the mini football field outside.  We toured some more of the ND campus and ended the day with a wonderful dinner at an on campus restaurant.


I can't say Thank You enough to the students who excepted Tylor, listened to his story, and spent the weekend with us!!  You are all truly amazing and we wish you all the best. 

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