Message from Theresa Liao

Today I have a rare opportunity to explain why I am here in Minnesota, and I am taking this time to first thank God, my husband, Roger - together we have created four exceptional children - our friends, the doctors and researchers who have so profoundly affected the lives of my family, most importantly two of my children. I have four wonderful boys whose lives have been ravaged by an incredibly rare and horrible disease. My oldest son, Noah, is EB free but has shared so much of the suffering his brother Jacob has endured. My third son Julian, also EB free, was able to share his umbilical cord blood and bone marrow to help his baby brother, Nathaniel.

Nathaniel was the first child to receive this type of transplant for epidermolysis bullosa; he has recovered very well from transplant and is on the path to being bandage free. But this journey began with a promise that I made to my son, Jacob. He was born with large portions of skin missing from his body and very severe wounds. While I held him in the hospital during the four weeks he spent in the intensive care unit after his birth, not knowing what else to do, I made him a promise to make this better, to make his life better.

His strength and his courage is what has given me the ability to get up every morning and fight this disease. To never give up on him and to continue to live our lives and move forward. And by moving forward, finding a way to make it better.  He has never given up on me.

Jacob received a cord blood transplant on Friday, May 30th at 2 p.m. from an unrelated, unknown donor. I will never be able to tell the mother of the donor, “Thank you,” but the cord blood donation has given Jacob the possibility of living bandage free. So to all of the mothers - all over the world - who have donated cord blood from their child: I thank you all. You have given Jacob and other recipients a chance to live.

There are many people to thank: To my dear friend Madeline Weiner, who helped me pick up the pieces and provide direction after Jacob's birth: you have always been a safe sounding board and balance for me; to Dr. Angela Christiano, for connecting with me after Jacob was born and helping in any way possible; to the New York Blood Center – Drs. Pablo Rubenstein and Carmelita Carrier - for your undying concern and support; to Dr. Vincent Falanga for your vast wound care knowledge and courage to push the boundaries of wound care to help in this fight; and, to Drs. John Wagner, Bruce Blazar and Jakub Tolar: you all listened to my cry for help; you have all taken the action you could.

Thank you to the people who donated to our 'Friends of Jake' fund and to the Minnesota Medical Foundation Epidermolysis Bullosa Research Fund, both which supported this research. To the Children's Cancer Research Fund for your generous support - I wouldn't be here if it wasn't for your support of Dr. Wagner and the BMT program here at the University of Minnesota's Children's Hospital, Fairview. I thank you. You have all taken my family into your hearts and provided an opportunity for Jacob and Nate to have a life without suffering from epidermolysis bullosa.

When Jacob was born, there was very little hope for a complete correction of this disease. But now, for new parents, there is so much hope. This is a battle which my family is winning. Dr. Wagner, thank you for helping me keep my promise to my son.