Pikesville mother Dr. Chani Simhi is a fierce advocate for her son Daniel. (Provided photo)

After a healthy and uneventful second pregnancy, Dr. Chani Simhi, a pediatric dentist and native Baltimorean, was completely unprepared when her son Daniel was born with multiple medical complications.

“Initially, I just had no idea what to do,” Dr. Simhi recalls.

“You’re so emotional when you give birth and have so many hopes and dreams when you’re expecting a baby. Then this baby comes with so many needs and you’re just exhausted. It’s hard to even imagine the future of this child.”

Shortly after his birth in 2015, Daniel was diagnosed with cervicomedullary arteriovenous fistula — a dense knot of blood vessels in his brain stem that can cause seizures and other brain abnormalities — and linear nevus sebaceous syndrome, a rare congenital disease that can cause malformations in organs and systems including the central nervous system.

In his first three months of life, Daniel struggled with cardiac problems. But once doctors helped to stabilize the infant, the real challenges began. Daniel began having seizures — sometimes as many as 60 per day.

Daniel, Dr. Simhi and her husband Naor “basically lived at Johns Hopkins for the first three years of his life,” says Dr. Simhi. That was the case despite the fact that the couple had a 7-year-old daughter at home with a nanny and that Dr. Simhi was just beginning her dental school residency.

“It was nothing out of the ordinary for Daniel to have 14 medical appointments,” Dr. Simhi recalls of a “typical” month. “How do you manage and keep track? It’s just overwhelming to have so many different specialists and being on top of it.”

To make matters worse, Daniel did not respond to any of the seizure medications doctors tried. His constant seizures made it difficult for him to achieve developmental milestones such as learning to talk and moving the left side of his body. It was not for lack of trying. Dr. Simhi recalls how her son tried crawling only to experience a seizure and bang his head on the floor.

Daniel’s seizures also meant that he was unable to benefit from therapies that could have hastened his physical and cognitive development.

Then, one day, when Daniel was 3 years old, he stopped seizing. No one knew why.

“Daniel’s neurologist is incredible,” says Dr. Simhi. “He said ‘sometimes they just stop.’ And he was humble enough to say ‘maybe it was your prayers.’”

Once seizure free, Daniel was able to take part in the intensive therapies he needed to make progress. Within 10 days, the toddler was enrolled in Kennedy Krieger Institute’s Specialized Transition Program, a neuro-rehabilitation day treatment program where he received speech, physical and occupational therapy for six weeks. Thereafter, Daniel continued those therapies on an outpatient basis and through Kennedy Krieger’s Community Rehabilitation Program.

Nowadays, 7-year-old Daniel is thriving. He attends the Gateway School in Baltimore where he is a second-grade student. Though he sometimes experiences seizures, they are relatively infrequent and short in length. In addition, Daniel now responds to seizure medications. The verbal skills Daniel has developed make it possible for him to communicate about his seizures and to advocate for his own care.

So far, doctors have not been able to treat Daniel’s linear nevus sebaceous syndrome, but it is being closely monitored. Daniel has some “vision differences,” caused by that condition, but he is being followed by an ophthalmologist and is progressing with his reading skills. With his mother’s help, Daniel has even been learning to read Hebrew!

“I’m so proud,” says Dr. Simhi. “Now I think he might be able to read for his bar mitzvah, because he’s made such incredible gains. I mean, even his [health care] team is just always amazed by him.”

Dr. Simhi attributes Daniel’s progress to the professionals at Kennedy Krieger as well as by her Jewish communities — Suburban Orthodox Congregation and Congregation Beit Yaakov.

“We have an incredible community in our synagogue and the resources in the community are really amazing. When I think about our situation, it really did take a village. Daniel is loved by really everyone who knows him, and they’re really part of who he is.”

Dr. Simhi, now a mother of four, offers the following advice to parents of children with special needs.

“No. 1: really advocate for your kid and get what they need. I see how far Daniel’s been able to get with really good advocacy. And never give up. If I think about what Daniel looked like when he was born and the trajectory that we expected for him vs. looking at him now, his providers cannot believe it. Kids are amazing. They’re so resilient and they can do so much. They’re born with so much potential. You just have to help them reach it. There is always hope.”

You May Also Like
Sandra R. Berman Center for Humanity, Tolerance & Holocaust Education Dedicated at Towson University

The center's mission is to promote education on humanity, tolerance and the Shoah to highlight the dangers of bigotry and intolerance.

Orioles Sale to David Rubenstein Group Approved by Major League Baseball
David Rubenstein

The product of a blue-collar Jewish family, the Baltimore-born Rubenstein, 74, is a multi-billionaire lawyer, businessman and philanthropist.

Two Orthodox Men Attacked in Northwest Baltimore While Walking to Synagogue
Mt. Washington

Baltimore County Police and Shomrim are searching for a black Kia Optima with the license plate 4BA3705.

Mother-and-Daughter Artist Team Exhibited at Gordon Center’s Meyerhoff Art Gallery
Margy Feigelson and Laura Kellam

On display through May 1, “It’s All Relative: Dual Impressions of Nature" features the works of Margy Feigelson and Laura Kellam.