2020 has been 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. According to Dr. Souweidane, Emiliano has been doing extremely well since the procedure. His family will be staying in NYC for a few months while Emiliano’s progress is being supervised.
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 MSK. We like to believe that Cristian is pulling some strings in Heaven for our new little friend.
The Aguilars flew in all the way from Mexico and are now caring for Emi full-time. The financial burden of Emiliano’s situation is almost incomprehensible. They recently received a bill for $35,653 for physical therapy alone and that is just the tip of the iceberg. Thankfully, we’re happy to share that with the help of the Cristian Rivera Foundation, JRF has pledged $9,000 towards the Aguilars’ Airbnb and living expenses during their stay in NYC for treatment. In addition, the Cristian Rivera Foundation has given them $10,000 towards their expenses. However, they are still in dire need of assistance with other medical and living expenses during this trying time.
After what has been a whirlwind of getting Emiliano treated on Dr. Souweidane’s trial, we know this is only the beginning for this beautiful family. Please share Emiliano’s story with your networks and social media platforms and ask others for donations to support them through the next couple of months. You can donate directly to Emiliano’s family here cristianriverafoundation.org/help-emiliano/. 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!