We apologize for not updating this website as often as we would like and appreciate everyone’s patience as we know you want to know how they are doing. Nathan continues to struggle with his body. He is able to get on all fours with difficulty and involuntary muscle contractions are making it very difficult for him to manipulate objects with his hands.
Dillon is doing very well, so well in fact, that we decided to run genetic testing on him to confirm the diagnosis. Unfortunately, the test confirms he has the same genetic mutations as Nathan. We are told, that as every child is different, presentation of disease varies dramatically from person to person and even from sibling to sibling.
In a tremendous effort to continue fund raising, Nicky Holender is running the San Francisco Marathon on July 26th. Nicky and Isabelle have three beautiful children, two who attend Nathan’s school, and we can not thank them enough for their support and compassion. According to Nicky, he has never run more than 3 consecutive miles in his life so we wish him all the luck in the world and thank everyone for supporting him with pledges to help support Nathan and Dillon!
