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 ....