We are a non-profit organization for pediatric brain cancer, established in loving memory of our Ava and committed to increasing access to treatment for those children diagnosed with life-threatening brain tumors. We strive to make a difference for brain tumor patients.
In the face of a debilitating brain tumor illness, Ava proved herself to be a true survivor in every sense of the word. Despite the weight of her own suffering, she remained committed to others, demonstrating a remarkable capacity for empathy and selflessness.
In the face of a debilitating brain tumor illness, Ava proved herself to be a true survivor in every sense of the word. Despite the weight of her own suffering, she remained committed to others, demonstrating a remarkable capacity for empathy and selflessness.
Our Story
We are a nonprofit organization created in loving memory of our Ava and committed to increasing access to treatment for those children diagnosed with life-threatening brain tumors.
About Ava
Our daughter and ballerina, Ava, was diagnosed in September 2020 with diffuse intrinsic pontine glioma (DIPG). Twelve-year-old Ava developed headaches which got progressively worse and included double vision just prior to diagnosis. We will never forget the day that Ava’s neuro-oncologist said, “tumor,” “brainstem,” and “inoperable,” and “she has about a year to live.” Our hearts and our world shattered. Also, on diagnosis day, we were told the only standard of care for DIPG is radiation, which may shrink the tumor some, but the tumor will grow again. It was inconceivable to us that our beautiful, full-of-life daughter was just given a death sentence with nothing more for treatment than radiation, providing only a few extra months of life. We were living our worst nightmare.
DIPG is a rare, aggressive brain tumor that mostly affects children between the age of 5 and 9; however, older children and young adults can develop DIPG as well. Pediatric brain tumors are the leading cause of death in children in the United States, and DIPG accounts for 20% of all brain tumors in children and 80% of tumors in the brainstem. This disease attacks the vital cranial nerves in the brain, which robs the child of the ability to speak, hear, see, swallow, and move their limbs, all while keeping the rest of the brain intact as they remain fully aware of their environment. DIPG is a monster, and there is no cure. Fortunately for Ava’s journey, we were able to enroll Ava in a clinical trial at our local children’s hospital. At the time, this trial had been shown to extend the life of children with DIPG. As soon as Ava finished her first round of radiation which successfully shrank her tumor, she got started with her first clinical trial. Ava’s tumor remained stable for ten months! During this time, we found a very promising clinical trial at a hospital over 400 miles away from home. We knew that this tumor could progress quickly, and we had to make a plan to get her to this trial. After about three months planning and preparing, we were ready to go! But because of circumstances involving the spread of her tumor, Ava was unable to safely start this new treatment when originally planned. Although disappointed, we were not defeated. We had to come up with another plan. With the hopes of shrinking her tumor to a safe size so as to try again to enroll Ava in our desired trial, we decided to have Ava undergo radiation therapy for a second time. This was an excellent decision. Ava’s tumor shrank, again, significantly. Six months after our first failed attempt at our desired trial, we traveled 400 miles, and Ava was finally able to enroll and receive her first treatment on the new trial. Unfortunately, the treatment didn’t work for Ava because her tumor began to grow rapidly again. The growth was greater than we could have imagined in such a short period of time. Ava was deteriorating quickly. Time was running out. We came home and began hospice care. In June of 2022, Ava laid down her sword, and went to be with our Lord nearly 21 months after her diagnosis. With our lives forever changed by the loss of our precious, beautiful daughter, we knew that we couldn’t remain idle as children continued to suffer and die from this terrible disease. Honoring our daughter while helping others is how En Pointe for Ava was born. During one of our 400-mile drives for treatment with the plan to be out of town for a month, Ava asked me, “Mom, does insurance pay for the hotel?” I, of course, told her, “No.” She then asked, “How do families pay for travel and hotels?” I had to explain to her that not all families have the financial means to travel for treatment. I also told her that we were blessed with the support of others, which allowed us the ability to travel for treatment. But not everyone is as fortunate as we are. She told me that it broke her heart to learn that some kids don’t have the same opportunities as others which, included herself. She sat quietly for a while in the car. Finally, she said, “That’s not fair.” This car conversation was the catalyst behind our mission: to increase access to treatment for families with children diagnosed with life-threatening brain cancer. Moving forward with our mission will help get children the care that they need, and we will do our best to defeat DIPG and other brain cancers. We will do this for Ava so that it’s fair. I hope you can join us. With much love,
Kevin, Becky, Charlie, and Ava
DIPG is a rare, aggressive brain tumor that mostly affects children between the age of 5 and 9; however, older children and young adults can develop DIPG as well. Pediatric brain tumors are the leading cause of death in children in the United States, and DIPG accounts for 20% of all brain tumors in children and 80% of tumors in the brainstem. This disease attacks the vital cranial nerves in the brain, which robs the child of the ability to speak, hear, see, swallow, and move their limbs, all while keeping the rest of the brain intact as they remain fully aware of their environment. DIPG is a monster, and there is no cure. Fortunately for Ava’s journey, we were able to enroll Ava in a clinical trial at our local children’s hospital. At the time, this trial had been shown to extend the life of children with DIPG. As soon as Ava finished her first round of radiation which successfully shrank her tumor, she got started with her first clinical trial. Ava’s tumor remained stable for ten months! During this time, we found a very promising clinical trial at a hospital over 400 miles away from home. We knew that this tumor could progress quickly, and we had to make a plan to get her to this trial. After about three months planning and preparing, we were ready to go! But because of circumstances involving the spread of her tumor, Ava was unable to safely start this new treatment when originally planned. Although disappointed, we were not defeated. We had to come up with another plan. With the hopes of shrinking her tumor to a safe size so as to try again to enroll Ava in our desired trial, we decided to have Ava undergo radiation therapy for a second time. This was an excellent decision. Ava’s tumor shrank, again, significantly. Six months after our first failed attempt at our desired trial, we traveled 400 miles, and Ava was finally able to enroll and receive her first treatment on the new trial. Unfortunately, the treatment didn’t work for Ava because her tumor began to grow rapidly again. The growth was greater than we could have imagined in such a short period of time. Ava was deteriorating quickly. Time was running out. We came home and began hospice care. In June of 2022, Ava laid down her sword, and went to be with our Lord nearly 21 months after her diagnosis. With our lives forever changed by the loss of our precious, beautiful daughter, we knew that we couldn’t remain idle as children continued to suffer and die from this terrible disease. Honoring our daughter while helping others is how En Pointe for Ava was born. During one of our 400-mile drives for treatment with the plan to be out of town for a month, Ava asked me, “Mom, does insurance pay for the hotel?” I, of course, told her, “No.” She then asked, “How do families pay for travel and hotels?” I had to explain to her that not all families have the financial means to travel for treatment. I also told her that we were blessed with the support of others, which allowed us the ability to travel for treatment. But not everyone is as fortunate as we are. She told me that it broke her heart to learn that some kids don’t have the same opportunities as others which, included herself. She sat quietly for a while in the car. Finally, she said, “That’s not fair.” This car conversation was the catalyst behind our mission: to increase access to treatment for families with children diagnosed with life-threatening brain cancer. Moving forward with our mission will help get children the care that they need, and we will do our best to defeat DIPG and other brain cancers. We will do this for Ava so that it’s fair. I hope you can join us. With much love,
Kevin, Becky, Charlie, and Ava
Our Mission:
Increase access to treatment for families with children diagnosed with life-threatening brain tumors.
Our Vision:
Assure that children can receive the care they need anywhere that they need it.
We value diversity, promote equality, and challenge discrimination.
Supporting Those Children Affected by Brain Tumors
We are striving to rise above the circumstances that arise when being diagnosed with a brain tumor and find purpose by creating a brain tumor treatment charity inspired by Ava's story. She is a shining example of the power of resilience and the human spirit. We at En Pointe for Ava are dedicated to supporting those affected by this disease. Contact us today if you’re interested in helping.
Make a Donation
Pediatric brain tumors wait for no one. Please donate today.