“Aryeh’s Special Smile” Supports Families with Sick Children

By Libby Herz

The hospital door burst open, and two doctors stepped in. Two-year-old Shula’s eyes opened wide, and she let out a piercing screech. Her mother, Chaya, tried to calm her down, but both of them knew what to expect from the people in white coats – poking and prodding, tests and tubes, and the dreaded words, “You’re going to need to stay here longer.”

It was ten p.m. In a perfect world, Shula would be dreaming, tucked safely in her crib. But she was born with a serious health challenge which forced her to replace trips to the park with long hospital stays and intensive care.

Chaya reached into her blue duffel bag, the words Aryeh’s Special Smile stitched into the fabric. She pulled out a SwaddleBee blanket and draped it around Shula’s shoulders. “Shhhh,” she cooed. She rummaged some more and pulled out her baby’s favorite toy. She placed the stuffed cow in her daughter’s hand and heard her breathing slow down. Shula began to relax. “You’re gonna be ok,” Chaya murmured.

Aryeh’s Special Smile is a 501-c3 organization founded by Rabbi Yitzchok and Bracha Brown in memory of their baby, Chaim Aryeh Dovid Michoel. They prepare packages for parents of children with serious health challenges. The bags include blankets for the parent and baby, snacks, a book, a charger, a pocket-sized Tehillim, a notepad/ personal journal, hospital socks, a tichel, baby toys, makeup wipes, hand cream, thank-you notes and gifts for nurses and doctors, shir hamaalos clips, and more. All of these items are packed in a special duffel bag and ready to go.

Bracha remembers her numerous stays at the hospital. “You feel very much alone,” she says. “Doctors are medical professionals and are not always sensitive to parents’ emotional states. The parent needs to make split-second decisions and arrangements at a moment’s notice, like transportation to and from the hospital, organizing for child care, and more. So much is happening at once, you often have no headspace to remember basic things like packing a phone charger or snacks for the hospital. ”

Aryeh’s Special Smile was created for children born with serious health challenges, syndromes, and other medical predicaments. Sometimes these complications are known in advance of birth, and sometimes they are complete surprises. The hospital care packages are generously filled with anything a family could possibly need during their child’s hospital stay, including essentials and non-essential, to let the family know that someone is there that cares for them.

“Hospital blankets are really rough and uncomfortable,” Bracha says. “Sometimes, we would forget to bring our blanket from home. We put a lot of toys in the package because sometimes we were in the hospital and had nothing to do. It helps to have a distraction. We have a lot of toys that Aryeh enjoyed, and other kids will enjoy too.”

The packages provide solace to harried parents who are just trying to do their best for their child. “What an amazing organization you have,” says one mother. “We had to run out for an appointment, so I had your Kind Bar for breakfast. Then we needed to stay overnight, and I realized I had forgotten makeup wipes. I hate sleeping with eye makeup on. I looked in the duffel bag, and there were eye makeup wipes right there!”

Special attention is given to the details. “Sleeping with the SwaddleBee you packed is so much better than the hospital blankets!” says another parent. “We were out of town for five days of intensive six hours a day therapy, and packing this time was so much easier because I used your pen, paper, and tichel. And the little pom pom – my Shalom loved it! It kept him busy and took his mind off everything.”

The organization is run in blessed memory of Chaim Aryeh Dovid Michael, who was diagnosed with Moebius Syndrome at a few months old. This disorder is characterized by weakened facial and breathing muscles, which can cause many difficulties and complications.

After he was born, doctors realized that Aryeh wasn’t able to keep a steady flow of oxygen going in his system. He was put on a breathing tube to facilitate and assist his breathing and spent the first three months of his life in the NICU. At two months old, he had a tracheostomy operation, allowing for a more stable form of breathing support.

His parents were elated when he was finally cleared to leave, but the feeling did not last long. The protocol with such fragile children is that they are not released home immediately. Instead, there is an interim step of being admitted to a children’s rehab facility, which is medically equipped to care for children with special medical needs but less intensive than an ICU. Aryeh’s parents began training to require the necessary medical knowledge to manage his care themselves, with the long-term goal of bringing him home. Unfortunately, he never made it in a physical, typical sense, but he is forever with them in their hearts.

Aryeh was a special boy. One of the telltale symptoms of Moebius Syndrome is weakened facial muscles, which can border on a paralytic state. Due to this, Aryeh wasn’t able to smile in a typical way. But when he was happy, everyone in the room could pick up on it. He had a unique way of communicating his feelings through his eyes and body language. He was a favorite amongst the nurses at the rehab and hospital facilities he stayed at, and many people remarked that he was surprisingly aware of his young age. He loved playing with his toys in his crib and banging things on the walls of the crib.

This Wednesday marks the baby’s first yahrzeit, as Hashem took Aryeh on 2 Tamuz 5782 at the age of 11 months. His passing was sudden, as he was doing well for a while. Aryeh left a tangible impression on doctors, nurses, and family members and is sorely missed by many at the facilities where he was treated and lived. His parents ask that readers do a special mitzvah in his honor on this day.

“Just like Aryeh had his unique and special way of smiling,” says Rabbi Brown, “we want to put a smile on the faces of families who are in places of great need. All of this is done to greet Moshiach Tzidkeinu and the era of complete redemption!”

By providing support and comfort to families with sick children, Aryeh’s Special Smile is making a difference in the lives of those who need it most. The organization currently services any family in the tri-state area with a child with extra medical needs requiring frequent hospital/ rehab stays.

If you are interested in learning more about Aryeh’s Special Smile or would like to make a donation or get involved as a volunteer, you can visit their website at aryehsspecialsmile.org. They can also be reached by email at: [email protected] and @aryehsspecialsmile.