Nyla M Nyla’s Journey with Lissencephaly

“We are beyond pleased with the services and staff at Children’s Specialized Hospital,” said Nyla’s parents. “All of her therapist and doctors work together to create a plan that works for our daughter. The therapists have been a backbone for our family.”

When Nyla was only two days old, she was diagnosed with Lissencephaly, a rare condition that affects only 1 in 100,000 babies. This diagnosis left her parents feeling fearful and helpless. Nelson and Genesis had no idea what the future would hold for their brand new baby girl. The only thing they did know for sure was that they would do everything in their power to ensure that their baby had the best quality of life.

Since Lissencephaly is a rare condition, Nyla’s prognosis is uncertain. Children with Lissencephaly often have difficulty reaching milestones such as crawling, sitting, speaking, and eating.

The typical human brain has folds, which allow it to communicate with the rest of the body. Nyla's brain, however, is smooth, preventing it from communicating and leading to tonic seizures in which she loses consciousness and her muscles aggressively contract. When her brain tries to communicate, it causes a "sensory overload."

NylaNyla's parents began searching for experts and specialists who could provide their daughter with the care she needed. Nearly every doctor and special needs parent they contacted recommended Children’s Specialized Hospital (CSH). Nyla soon began receiving pediatric services at the CSH Union outpatient center and therapy sessions at the CSH Plum Street outpatient center.

Children with Nyla's condition are usually associated with complete mental disability and Nyla is considered Grade 1, the most severe. Since coming to CSH for expert care, she has defied the odds and made incredible progress. At one year old, Nyla can now hold her head up, kick her feet, recognize her parents, eat puree, and even smile. Her development is equivalent to that of an average five-month-old, which is quite hopeful for a child with her condition.

“We are beyond pleased with the services and staff at Children’s Specialized Hospital,” said Nyla’s parents. “All of her therapist and doctors work together to create a plan that works for our daughter. The therapists have been a backbone for our family.”

Genesis, Nyla and NelsonNelson and Genesis expressed their appreciation for the staff at both CSH outpatient centers, stating that they have become like family to them. It warms their hearts to see how much the staff genuinely cares about their daughter and all of the other children in their care.

"Taking care of children like Nyla reminds me every day of why I went into medicine, and pediatrics in particular. Her parents are an inspiration the way they are dedicated to Nyla's care and it has been so special to watch Nyla grow,” said Dr. Lauren Martin, Nyla’s Pediatrician. “It has also been wonderful to be able to help coordinate her care with other specialties and departments within Children's Specialized including physiatry, rehab tech, OT, PT, and ST. I even got to see Nyla and her family and friends supporting her at the Walk 'n' Roll. I look forward to continuing to support her family in helping Nyla reach her full potential!"

They also noted that the staff are very aware and mindful of Nyla's seizures and overall needs during their sessions. There was an instance when she began choking on her saliva, and while at once fearful, they were quickly reassured by the skillful attentiveness of every staff member in the room as they ensured that Nyla was okay.

Genesis, Nyla and NelsonOne of Nelson and Genesis' favorite aspects of coming to CSH is meeting other children and families living with complex medical conditions and special health needs. It is a constant reminder that the possibilities for their daughter are endless, despite her diagnosis, which gives them hope for the future.

Beyond rehabilitation services, CSH has helped the family in other aspects of life. To focus on giving Nyla the best care, Genesis left her job to become a full-time caregiver for her daughter. She credits Family Faculty at Children’s Specialized for helping make that transition easier for their family.

Family Faculty is a CSH staff department made up of parents and family members whose children have received or are still receiving services at CSH. Their own experiences provide a unique perspective, understanding, and empathy for families going through similar situations and are an invaluable resource to CSH families.

NylaMembers of Family Faculty helped Nyla’s parents navigate social security, applying for WIC benefits, and even finding accessible parks and sensory-friendly events and activities so the family can have fun while avoiding loud noises that trigger Nyla’s seizures. Nelson and Genesis are grateful to have someone to consult who has been in their shoes before.

“Over time, we have learned that you don’t always have to go by the textbook or what Google says. Every child is unique,” said the parents. “That’s why Children’s is for us. They don’t count her out because of what she won’t be able to do statistically. They never let the impossibilities of her disability stop her.”

Overall, Nelson and Genesis just want their daughter to live a happy life with the best quality of care possible. “Nyla is the happiest baby,” her parents shared. “She loves Sesame Street, food, and any upbeat music, especially house music. She’s also a HUGE daddy’s girl.”


For more information, visit Children's Specialized Hospital.