Los Angeles is living through its own apocalyptic nightmare. The fires raging across this great city have left so many displaced, heartbroken, and fighting for survival. We are overcome with grief for those we know and love who have lost everything, for those who are still fighting, still wondering if they have anything left. Our hearts are shattered for the countless lives upended by this catastrophe.
These proceeds can help support some of our first responders, the real-life heroes that put themselves in harm’s way for the rest of us and also our city’s most vulnerable.
Los Angeles Fire Department Foundation: Proceeds will be used for equipping firefighters with tools and supplies to contain the fires. For more information visit: Los Angeles Fire Department Foundation
California Community Foundation’s Wildfire Recovery: Contributions will go toward the most impacted and the most vulnerable Angelenos who can be overlooked in traditional relief efforts. For more information visit: California Community Foundation
ORDER AFTER THE FLASH ON AMAZON!
ORDER SIGNED PAPERBACK COPY FROM MARIE - Please note these will be shipped as soon as inventory is available!
ORDER DIGITAL BOOK FROM MARIE - Please note these will be emailed as soon as book is available.
*Donations will come from the net proceeds of this book’s sales, after deducting expenses such as printing, distribution, and transaction fees.
Time of the UnDead, curated by Lee Edwards. All proceeds from the sales of Time of the UnDead will go directly to the Nora Jane Foundation, a nonprofit organization dedicated to funding research for NKH. Due to the rarity of the disorder, there are only two institutions in the U.S. researching NKH.
WHAT IS NKH:
NKH is a terminal illness that causes severe neurological issues leading to weak muscle tone, respiratory issues, seizures and developmental delay. There is currently no cure and only a couple treatments that are thought to possibly improve daily life.
For those moved to contribute further, donations can also be made directly to the Thigpen family. Fundraiser for Odelia Thigpen
MEET JOYCELYN:
Joycelyn is a 13-year-old girl who loves horses, oldies music, and a good poop joke. She also has a life-limiting rare genetic disorder, Nonketotic Hyperglycinemia, or NKH.
When Joycelyn was born, she was floppy and wouldn’t wake up, even to eat. Doctors were mystified, and she spent 5 ½ weeks in NICU before a diagnosis was made. She required life support and a feeding tube, and at only a couple weeks old had intractable seizures. She was 2 ½ weeks old before she woke and opened her eyes for the first time. We were told that she would not know us or be able to feel emotions, and that she would not live to see her first birthday. We took her home with a strict regimen of feeding, medications, and therapies.
Joycelyn quickly proved the doctors wrong, and her personality began to shine. Despite the many obstacles she has faced, she finds joy in her family and new experiences. She loves watching fireworks and hearing kids playing. Although she is unable to speak, she communicates clearly to those who know that she is happy or upset. She loves to be with people that she knows and gets excited when her teacher shows up each day. She recently celebrated her 13th birthday, which is a huge milestone.
Although Joycelyn is a very happy girl overall, she does face many struggles daily. Because of weak muscle tone, she is unable to do anything for herself, and needs assistance with all parts of her life, including simple things like shifting her position. She has a difficult time gaining and maintaining a healthy weight and deals with stiff and painful muscles. She has extremely brittle bones which can break very easily. Despite multiple seizure medications, she still has seizures on a regular basis, which can be frightening, painful and exhausting. She has a lot of respiratory problems and has to have treatment every day to keep her lungs clear and healthy. Traveling and having to transition multiple times from her wheelchair to her car seat and back is uncomfortable for her. She sees multiple specialists and has many appointments each month, frequently accompanied by bloodwork or other painful procedures.
Joycelyn has spent weeks each year in the hospital fighting for her life. She has had numerous pneumonias and infections, requiring life support and extended hospital stays. Because of complications with NKH she has required multiple surgeries and interventions to continue living comfortably. This year alone she has been hospitalized for pneumonia, had spinal fusion surgery, and she is currently hospitalized for respiratory failure and has had surgery for a trach. She is scheduled to have another major surgery next week to remove hardware from her spine that is threatening to protrude through her skin. She has been in the hospital for 7 weeks already and is expected to need several more weeks or months before she is recovered enough to go home.