LETS SUPPORT AVM RESEARCH TO HONOR OUR WARRIOR, EESA

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Today, we can celebrate Eesa's life with all of you due to the care and efforts of the Neurosurgery, Neurology, and the Rehab teams at CHOP. We especially want to acknowledge Dr. Philip Storm who helped save our Eesa's life. 

On April 28, 2023 we took Eesa to urgent care because he had been complaining of a stiff neck, headache and nausea. All his symptoms were dismissed as possible viral infection after the usual testing for COVID, Strep and Flu came negative. The urgent care did not scan him, and we did not know any better to push for it. Eesa recovered few days later and resumed his normal activities. 

6 months later, on the fateful day of Nov 11, 2023, Eesa took to the knee in a soccer game, telling his coach he can’t play due to severe back ache. Five minutes later he vomited. A friend helped carry Eesa to the car and we thought “oh no, stomach bug!” However, in the car Eesa almost fell asleep and because he never naps, it didn’t feel right and we took him to the nearest emergency in New Jersey. 

After waiting there for 2 hours, Eesa told us his headache is getting worse, and few minutes later he muttered, "My head will explode”. Those were his last words before he slipped into a brief period of coma. Those words still echo in our ears and we won’t forget them till our last breath. The medical staff rushed him for a scan only to come back 30 minutes later to tell us this is a severe hemorrhagic stroke. The neurosurgery team came in and told us this is a catastrophic bleed and Eesa may not make it through the night. It will be an understatement if we say our whole world collapsed right before our eyes. 
 

Our lives would have been very different if Eesa had been taken seriously 6 months back because we later found out that was the first minor brain bleed. If they had done a scan, we would have learnt about the ugly beast called AVM in his beautiful brain. An AVM (arteriovenous malformation) is a tangle of arteries and veins in the brain that disrupt the normal flow of blood. This is a condition that is usually present at birth. Eesa had always been a healthy child but was born with an AVM that we were not aware of. And because we didn’t know this, our Eesa suffered a severe hemorrhagic stroke on Nov 11 when his AVM ruptured. 

During our one-week hospital stay in NJ, after multiple scans and an angiogram we were told Eesa had a Grade 3 AVM and it couldn't be operated on due to its large size and complicated location in the brain. It was during this time we heard about Dr. Storm at CHOP and his experience with complicated brain surgeries. We tried every possible way (through friends, friends of friends, colleagues) to get in touch with him but we were told it will be hard as patients travel to him from all over the world and getting an appointment can take up to 6 months. However, we were able to get Dr. Storm’s email and I, Eesa’s mom, emailed him saying “Eesa is my miracle child, can you please save his life?!”. Much to our surprise Dr. Storm responded within 15 minutes, asking for Eesa’s films. After examining his films, Dr. Storm called us and told us to bring him in immediately. We transferred Eesa to CHOP where he had two successful surgeries to remove his AVM and he stayed for few weeks in inpatient Rehab. 

We are so grateful that Eesa is here with us, waiting to show the world all the great things he is meant for. We request everyone to continue to keep Eesa in their thoughts as he fights through this. 

Meanwhile, we want to use every ounce of our energy and resources to be able to raise awareness around Pediatric Stroke and AVM, and fund related research in this area. We are asking for your help in supporting CHOP's research on AVM which is part of their Center for Data Driven Discovery in Biomedicine (D3b) program. Your donation, big or small, will help advance research efforts by supporting molecular data generation for existing AVM samples (including Eesa’s that we have given consent for), allowing researchers to better understand the genetic underpinnings of AVM. It will also ensure the program’s ability to continue to consent new patients and expand the sample data set. Please help us in supporting this cause!  

Thank you, 

Sana and Omer