When Dani was first diagnosised there were a few families that stuck out as Jason and I researched this "disease". One of those was the Holland's. They have three children and all have MPS I. They are a wonderful family and Friday night Spencer (the oldest) passed away. I personally feel that if it was not for them and one other family we would not have the enzyme infusion today that gives our kids back the enzyme they are missing.
They have done additional studies to try to improve our kids outcomes and they feel that might of been the cause of Spencer's death. I know that without their efforts in the research we would not have progressed as fair as we have in solutions to a cure.
If it was not for the pioneers we would not get anywhere and I want them to know that I appreciate everything they have done to get us this far in the fight to cure MPS.
Their web page is .... http://www.caringbridge.org/visit/hollandkids Please send a thought and prayer to them ....
Sunday, January 27, 2008
Tuesday, January 15, 2008
Christmas was wonderful. I hope you all had a wonderful holiday also. We accomplished quite a bit around the house. And I, for one, am very happy the holidays are over.
We did hear from the hospital that the donor is very interested in meeting us but I have not heard anything from the donor yet. We are hoping for a much calmer year this go around and for the kids to enjoy it.
Gabe and Ethan are doing wonderful at school and Dani is above her age level in skills. Her next appointments are not until March but we are going to start looking into Daycare for her. She needs to be around other children and both Grandma's have done far above what is expected from them. I am hoping to hold it off until she has at least her first immunization shots but we will see.
I hope everyone has a wonderful year!!!!