The HeART Auction, organized by a 17-year-old sibling of a DIPG warrior, is truly an example of kids helping kids. When Grace Desserich was only 4-years-old she watched her sister, Elena, battle a difficult to treat form of pediatric brain cancer known as DIPG. Though she was very young, Grace’s heartbreak was huge. After her sister’s death, their parents started The Cure Starts Now Foundation to fund research so no other family or sibling would have to face this harsh reality of cancer. Today, The Cure Starts Now Foundation is a leader in not only diffuse intrinsic pontine glioma brain cancer research (DIPG) but also in the funding of “homerun” cure research that applies to many other cancers worldwide. Since its creation in 2007, it has funded over $14 million in new cancer research in over 114 hospitals in 15 countries nationwide.
The “HeART Auction,” celebrates Elena's love of art while raising money to fund brain cancer research to help kids battling the same type of cancer. Grace has asked DIPG patients from around the country for the last 4 years to donate their HeART artwork for her auction and has raised over $20,000. Featured each year, this auction offers the special artworks for sale with proceeds benefiting DIPG research. Each child receives a kit including a canvas taped off in the shape of a heart complete with a small painting kit so that they may be created with ease.
“Grace has taken her love for her sister and is now sharing it with families fighting DIPG,” said Grace’s mother, Brooke Desserich. “Just as Elena was able to share her heart with so many, these children now get to do the same and we couldn’t be prouder.”
Elizabeth Turner is a mom to one of these DIPG warriors. Diagnosed with DIPG, David Jr. has shared his heart art through this special program. She writes about her son’s participation in the HeART Auction for the past 2 years, David Jr.’s prognosis and how children with a DIPG diagnosis are outliving the median survival range.
“David Jr. painted two hearts that hang on the walls at The Cure Starts Now headquarters in Cincinnati. You can see them both in their Facebook Live video with Rick Merk. In the video, Rick shares about how when he started at CSN, there weren’t children with multiple hearts on the walls at CSN, because most children with a DIPG diagnosis at that time only lived for a year or less. After the annual HeART Auction every year, CSN has two high quality copies made of each heart, one copy is for their office and the other is sent to the artist’s family. This year, David Jr.’s teachers and staff at his elementary school were the highest bidders for his heart that he designed to look like a shield, because he is stronger than any armor. His heart was the highest purchased this year, putting more money towards finding a cure.
This past April, we spent a week at the hospital because David Jr.’s tumor had progressed again. He’s gone into “progression” twice. Normally, symptoms increase and cannot be reversed. David Jr. has now completed a second and third course of radiation, successfully shrinking the tumor both times.
When we left the hospital in April, David Jr. couldn’t walk, or talk, and he had difficulty breathing, headaches, and dizziness, along with double and blurred vision. Before being discharged, the doctor shared that going to the ER wouldn’t benefit us if symptoms worsened. He also shared that if the chemo didn’t impact David Jr.’s tumor, we may only have weeks with David Jr. At that point, we weren’t sure if radiation for a third time was still an option.
Later that night, our radiation doctor called and David Jr. decided he wanted to do it again. Once David Jr. finished radiation, one day some of his symptoms were gone and others improved significantly. One night, he got up and walked around the house at 2:00 AM. That night, we had to lift him into bed and position him, but at 2:00 AM he got out of bed and walked around the house with zero assistance.
We’ve been living this life for more than two years now (almost 26 months). It is a rollercoaster of highs and lows, today we are on a high. It is unpredictable and exhausting. It is also exciting and our greatest adventure all in one.
I’m glad David Jr. has two hearts on their wall and ours, now we are ready for a third!”
At The Cure Starts Now, the staff is also ready for a third HeART from David Jr., who since his diagnosis, has been living by the motto, “Make every day the best day ever!” It is a way of life that has gotten David Jr. and his family through some very tough times and continues to inspire them to live life to the fullest. They have had so many incredible adventures, and their community in Louisville, Ky has fully supported them in helping make everyday the best day for David Jr. David Jr. has had some amazing experiences, including a parade by Louisville Swat and FBI for his two-year diagnosis anniversary, meeting Kentucky’s Governor Andy Beshear and First Lady, becoming an honorary Taco Bell employee, attending a car show hosted in his honor, a trip to Hawaii and a trip to LEGOLAND in Florida, along with many other adventures.
David Jr. has also been able to find joy and have exciting and amazing days because of small things, such as finding an open Steak n Shake on his current trip to LEGOLAND, watching a movie, getting his cousin a birthday gift, or just eating some ice cream with his family.
The Cure Starts Now continues to empower cancer families to not only tell their child’s story, but also create a legacy that inspires so many across the world. Since the creation of the program, 23 children have participated from as far away as England. To learn more about the program visit csnevents.org/heart.
