June 2001

Dear Friends,

 

It is possible that some people have not yet heard of Patrick's vicious battle at Texas Children's Hospital in Houston this past summer to have a chance to live more years with a higher quality of life.

Due to very disturbing circumstances we are still confronting, complications related to a bone marrow transplant ended his life on August 15th.

Patrick is no longer with us in the physical world, but his very strong, bright spirit is a constant and often comforting presence. Despite the unfathomable grief that we feel, we are simply compelled to carry Patrick's fight forward. To continue our journey now is unbelievably difficult. Not to carry on, however, would be impossible.

When Patrick was first diagnosed with ataxia-telangiectasia (A-T), he had no choice but to participate in research into his disorder. As he grew older, however, he ultimately became totally aware of what his condition meant and what we were attempting to do to find a treatment. As part of this process, he made very adult and very courageous decisions to explore every possibility that could help him and others with A-T live longer, better lives. These decisions meant extra risk and extra suffering that he was willing to bear to have a chance at life. Patrick knew, as did we, that any discoveries we made might not affect him. Nevertheless, he wanted to help others no matter what his circumstances were.

During Patrick's lifetime he became an inspiration for virtually every person who came into meaningful contact with him. For other children with A-T such as Garrett, Becca, and Emily, he became their hero and champion.

Even with Patrick's passing, we will do everything we possibly can to promote a treatment for A-T. By continuing this research, we will not only honor Patrick, but we will also strive to benefit all children with A-T and the whole of humankind through discoveries related to cancer and other A-T diseases.

We thank you for caring and for supporting The A-T Project. Patrick lived his destiny to the fullest and we must live ours. Please know that his work will proceed.

Very truly yours,
Robert Howard
Patrick's father
President of The A-T Project