Meet Emiliano

2020 was a difficult year for all of us, but for Andrea and Josue Aguilar, finding out their 2-year-old son Emiliano had DIPG (Diffuse Intrinsic Pontine Glioma) was a nightmare that seemed even more unreal in the midst of a worldwide pandemic. They started noticing Emiliano was having trouble walking back in March and after weeks of meeting with several specialists, there was no doubt that Emiliano had DIPG. By May, only a week after being diagnosed, their baby boy began receiving chemotherapy once a week for 30 sessions. Thanks to the chemotherapy, Emiliano experienced some improvements, but Andrea and Josue refused to remain idle knowing that DIPG can quickly progress.
Things began to look up when Andrea connected with the Cristian Rivera Foundation after a family member found us online. After an emotional phone call, we discovered that Andrea had already been in touch with our friend Dr. Kathy Warren from the Dana Farber Institute, but Dr. Warren viewed their situation as a priority with our involvement. We were also able to connect her with Dr. Mark Souweidane to see if Emiliano would be eligible for our clinical trial. With CRF’s help, in a matter of 2 weeks, Emiliano and his family flew into NYC to be treated on Dr. Souweidane’s trial at Weill Cornell Medical Center.

On Thursday, Sept. 17, Emiliano underwent the Convection Enhanced Delivery (CED) procedure under the care of Dr. Mark Souweidane. The whole procedure was split into two parts – the first was a 3-hour long surgery and the second was a 14-hour long infusion of chemotherapy directly to the tumor.

We cannot help but sense that fate has connected us with this incredible family after also learning that Emiliano is receiving care from the same oncologist and social worker that assisted Cristian many years ago at Memorial Sloan Kettering. We like to believe that Cristian is pulling some strings in Heaven for our new little friend.

We’re happy to share that with the help of the Cristian Rivera Foundation, JRF has donated $9,000 towards the Aguilars’ Airbnb and living expenses during their stay in NYC for treatment. In addition, the Cristian Rivera Foundation has given the family over $10,000 towards their expenses.

After being treated on Dr. Souweidane’s trial in September of 2020, Emiliano and his family are continuing to search for treatment options to support his wellbeing. This includes other clinical trials and experimental medicines. The financial burden of Emiliano’s situation continues to be an uphill battle.

Please share Emiliano’s story with your networks and social media platforms and ask others for donations to support them throughout this journey. You can donate directly to Emiliano’s family here We’re thankful to have given Emi a chance at fighting this terrible disease so far, but we need your help to keep him healthy and bring hope to DIPG children and families everywhere. Full Steam Ahead!