NTSAD Annual Family Conference
Later this week Lauren and I are flying to Boston for the NTSAD (National Tay Sachs and Allied Diseases) Annual Family Conference. Dave is going to stay home with Carmen since she still has C-diff. We are excited that NY Grandpa and Grandma and Dave’s aunt will be joining us for the conference. Just so everyone knows, they are really shy, quiet people. 
Last year we drove to Florida for the conference. We met families who have lost children to Tay Sachs and related diseases and we met families currently caring for their affected children. It was wonderful to spend a weekend feeling very normal. Suction machines and seizures weren’t at all surprising to anyone.
I really wish Dave and Carmen were coming with us. We will miss them very much!
Last year was hard in that Carmen’s disease symptoms were starting and this whole world was new to us. I am looking forward to getting new ideas from the Symptom Management seminar at the conference.
And of course, Lauren and I are looking forward to seeing the families and the children again. Quite a few children passed away this year. They will be painfully missed.
While I’m in various seminars and workshops, Lauren will hang out with the siblings and have a blast! This is a world we never, ever expected to find ourselves in but we are very grateful for NTSAD and the support this organization has given us.
Here is a picture of Rachel’s mom, saying hi to Carmen at last year’s conference.
It’s wonderful to hear about this organization and the connecting. I will keep Lana and Lauren in my prayers for this particular journey. And, I will lift up Dave and Carmen in a special way, as well. It’s truly grand to know that NY Grandpa and Grandma and Aunt Ruth will be drawn out of their shells for this adventure.
INDEED…. You all, including the NY’s, are such inspirations. Life is lived and loved because of you. Praise The Lord!!!!
My sister’s and my brother-in-law shy? LOL!!!! I hope you all have a great time. We will be praying.
Looking forward to seeing you in Boston!
Monica Gettleman
Hi, I hope you girls have a great time in Boston. Always I pray for you, Carmen. God bless. In Christ, Joe http://www.caringbridge.org/visit/saraweidemann
It will be difficult for me/us to come out of our shells, however, we are doing this for our children and grandchildren – - – the things we do for our kids!!!
We really can’t wait to see you both!