Mural Health

"We'll talk about her forever. It won't bring her back, but maybe it will raise awareness. Because I'd hate for another mom to go through this."

Darline and Anthony Medina created Brooklyn’s Petals of Hope Foundation to be what was missing during Brooklyn’s diagnosis: support, resources, and community for families facing DIPG. Learn more or donate to their mission here: https://brooklynspetalsofhope.org/

💛 Say Brooklyn's name. Ask about her. Don't be afraid to bring her up.

"If she is watching us, I hope she knows we're doing the best we can."

📖 Read more from Darline and Anthony here: https://portraitproject.muralhealth.com/story/brooklyn-medina

We've spent the past few weeks sharing Brooklyn's story - who she was, what she loved, what she went through. It's a story her parents, Darline and Anthony, live every day. This part of our conversation happened in Brooklyn's room, one of her favorite places.

If you haven't read Brooklyn's story yet, we hope you will. It's linked here: https://portraitproject.muralhealth.com/story/brooklyn-medina 💛

Some of the hardest parts of a clinical trial go unseen — the painful moments a family carries at home that trials aren't always designed to hold.

📖 Read Brooklyn's story from The Portrait Project here: https://portraitproject.muralhealth.com/story/brooklyn-medina

Brooklyn’s Petals of Hope Foundation

When there's no approved treatment, clinical trials become a lifeline for many families. But when Darline and Anthony went looking, they found a system that wasn't built for a child as young as Brooklyn. One trial accepted her, then called three days later to say she was too young.

📖 Read Brooklyn's story from The Portrait Project: https://portraitproject.muralhealth.com/story/brooklyn-medina

Brooklyn’s Petals of Hope Foundation

The signs were easy to miss at first. It wasn't until an MRI that was supposed to take thirty minutes stretched to ninety that Darline and Anthony knew something was really wrong.

What they were facing was Diffuse intrinsic pontine glioma (DIPG), the deadliest childhood brain cancer with no known cure. In Darline's words: "Just a few days earlier I was a regular mom. Suddenly I was a cancer mom."

🔗 Read Brooklyn's story here: https://portraitproject.muralhealth.com/story/brooklyn-medina

💛 Brooklyn’s Petals of Hope Foundation

Before any of it, there was just Brooklyn — who begged for one more book every night, who started a butterfly garden, and who knew the difference between a chrysalis and a cocoon. This is who Darline and Anthony want you to know.

📖 Read Brooklyn's story from The Portrait Project: https://portraitproject.muralhealth.com/story/brooklyn-medina

[Content note: this story is about the loss of a child.]

The Portrait Project is back.

Our newest story belongs to Darline and Anthony Medina, and to their daughter Brooklyn, who was three years old when she died of DIPG, the deadliest childhood brain cancer. DIPG has no approved treatment or cure.

We spent a day inside the Medina's home, and they told us all about Brooklyn. Darline and Anthony also shared what it's like navigating clinical trials when none of the options are good ones, and what grief looks like in the quiet after everyone stops asking.

This isn't the version of clinical research that fits neatly on a slide. It's the one a family actually lives. So we hope you'll slow down for this story and give it the few quiet moments it deserves. And for the clinical research industry, let's together sit with the question that Darline and Anthony are really asking: what will you do differently now?

📖 Read Brooklyn's Story: https://portraitproject.muralhealth.com/story/brooklyn-medina

Our participant & caregiver survey closes January 31st! If you haven’t taken or shared it yet, we would be so appreciative if you would.

We created this survey to better understand the participant experience in clinical trials — specifically the costs associated with participating — so that we can better advocate for fair reimbursements. This survey is intended for patients (or caregivers on their behalf) who have participated in or are currently in at least one clinical trial. All responses will remain anonymous.

LINK TO SURVEY: https://hubs.ly/Q033vxhl0

Thank you in advance for supporting our mission of making it easier to participate in clinical trials 😊

Nearly one-third of Americans are unable to participate in clinical trials due to financial barriers. Even those who do join often face a net loss, as many trials fail to fully reimburse participants (if at all).

That’s why The Patient Kindness Group at Mural Health created a survey to help us advocate for fair compensation and reimbursements in clinical trials, because no one should be denied access to potentially life-saving experimental treatments due to financial strain.

Your story and your experience matter. If you’ve participated in a clinical trial as a patient or a caregiver - or know someone who has - please take or share our survey to help us make a difference!

Take or share the survey using this link: https://yt4ocq58.paperform.co/