We miss Will.
Will burned bright and loud. He was a tough kid with a very sensitive heart. From the first few minutes I met him, I sensed a very specific kind of wisdom that only accompanies children who have lived years with constant physical and emotional pain. He was excellent at gaming and could recite any Yankee factoid that had been printed, tweeted, or voiced over a mic. He was a loyal friend. We didn’t finish his book due to some health complications, but whether we revisit the book or not (according to his family’s wishes), he mattered to me a great deal. There will always be a hole in my heart, in the shape of a star the size of Yankee stadium, for this boy and his presence he left with the world. We will always remember you, Yeet.
Will DeGregerio
Extraordinary Circumstance:
Li-Fraumeni Syndrome
Book Status: Waiting for direction from family
Words by Dallas Graham
Design & Illustration by Dallas Graham
Photography by Dallas Graham
Editing by Jeri Larsen
(Awaiting Will’s bio)
Some videos from his workshops.
Read his book. (Waiting for family’s direction.)
COPYRIGHT © 2020 BY DALLAS GRAHAM. ALL RIGHTS RESERVED. NO PART OF THIS BOOK MAY BE REPRODUCED IN ANY FORM BY ANY ELECTRONIC OR MECHANICAL MEANS INCLUDING PHOTOCOPYING, RECORDING, OR INFORMATION STORAGE AND RETRIEVAL WITHOUT PERMISSION IN WRITING FROM THE COPYRIGHT HOLDER.
Li-Fraumeni Syndrome
Li-Fraumeni syndrome is a rare genetic disorder that causes cancer early in a person’s life. In many cases, several different cancer types may be present. The disorder is usually linked to genetic mutations affecting the p53 tumor suppressor gene. Less common versions are caused by other mutations. Li-Fraumeni syndrome doesn’t cause symptoms in and of itself, but it leads to cancers that cause symptoms. The types of cancer that develop differ from one person to the next, but the most common types affect the brain, adrenal glands (small glands on top of the liver), and breasts. Sarcomas are also common.
About 50% of people with Li-Fraumeni syndrome will develop an invasive cancer by 30. By age 70, 90% will. About 90% of female patients will develop breast cancer by age 60. Li-Fraumeni syndrome can be managed in different ways. Some women choose to have a preventive mastectomy, which is a surgery that can keep breast cancer from developing. Patients are also encouraged to avoid a type of cancer treatment called radiation therapy, because it can cause secondary cancers. People with the disorder are also encouraged to go to regular checks for breast cancer and colorectal cancer by age 25.
Learn more about Li-Fraumeni syndrome at these great sources:
The Li-Fraumeni Syndrome Association: https://www.lfsassociation.org/what-is-lfs/
St Jude Children’s Research Hospital: https://www.stjude.org/disease/li-fraumeni.html
RED FRED PROJECT WOULD LIKE TO THANK OUR FRIENDS AT PATIENT WORTHY FOR THEIR RESEARCH AND PARTICIPATION IN SHARING THIS VERY IMPORTANT INFORMATION REGARDING THIS EXTRAORDINARY CIRCUMSTANCE. YOU CAN LEARN MORE ABOUT THEIR WORK AT PATIENTWORTHY.COM.