My name is Elie and I am a peds cardiac ICU nurse, I am writing on behalf of Diana, Sunny, and Jacob Seemangal. I’ve known Jakey since he was born on December 19, 2018 because he has hypoplastic left heart syndrome (HLHS). A normal heart has two strong ventricles, but he only has one ventricle that does all the work for the body and lungs. Babies with HLHS need open heart surgery within the first few days of life. It’s one of the highest risk and most technically challenging surgeries and the recovery is long. Babies not only have to recover from open heart surgery, but also learn how to eat before leaving the hospital. Something that always stuck with me during Jakey’s first hospital stay was how fiercely loving his mother is. Before they were discharged, Diana and I exchanged phone numbers. I was Jakey’s nurse, but Diana welcomed me into their family.

Diana would share updates as well as her fears. She researched HLHS endlessly and asked amazing questions to make sure that Jakey always got the best care. It wasn’t long before Jakey had to return the the hospital. In March 2019, he needed to return to Manhattan for his bidirectional Glenn. His chest was left open because he was so small, and the process of breathing tubes, chest tubes, wires and risk for infection started all over. HLHS requires three surgeries, but it’s so much more than that. It’s numerous cardiology appointments, speech therapy, occupational therapy, and multiple cardiac catheterizations. It’s also worrying that they will go into heart failure, need a transplant, or that a clot will form and get thrown into his brain.

About two weeks before Jakey was meant to go for his Fontan, I got a text from Diana. Jacob had a stroke and was rushed to Cohen’s Children’s Hospital. As their friend and I nurse, my heart ached. Sunny was with him and called the ambulance and Diana rode with Jakey to the hospital. He was intubated, multiple diagnostic and interventional procedure later they confirmed a clot had embolized to his brain in the basilar artery. His mom and dad moved incredibly fast to get him to the hospital and he got amazingly timely care but his road to recovery won’t be easy. He has left sided weakness and seizures secondary to the stroke.

Diana has always been one of the strongest women and mothers I’ve ever met. She started working in early intervention to help advocate for Jakey and kids like Jakey. Both she and Sunny are such fierce advocates for Jakey, but now they are asking for help. Diana has to stop working while Jakey recovers and needs a little help. I don’t know any family more deserving of your support.