Meet the Pierce Family

BY MARIA SMIETANA: EDITOR-IN-CHIEF

It’s not an everyday thing for someone to marry a single parent with special-needs children. But Lisa Pierce did just that. The soft-spoken Illinois native said that once she knew she would marry Chad Pierce, she was committing to Conner and Kylie, too, along with neurofibromatosis, the rare genetic condition that all three share.

Neurofibromatosis (NF) causes tumors (usually non-cancerous) to form in the nerves or skin. Type 1 (NF1) manifests in childhood, while types 2 and 3 typically appear in young adults. Children with NF1 can have tumors anywhere in the nervous system, including the brain, spinal cord, and optic nerve. They usually have skin pigment changes, such as freckling or light brown areas known as caféau-lait spots. Other symptoms can include irregular bone development, soft tumors under the skin, learning disabilities, and larger-than-average head size. The type and severity of symptoms vary significantly from person to person.

In half of NF cases, the condition is inherited from a parent. The remaining cases result from a spontaneous mutation that occurs during conception. Regardless of genetic origin, anyone with NF can pass the condition on to their child. Each child of an individual with NF has a 50% chance of being born with NF. Since Chad had no relatives with NF, his case is thought to have resulted from a spontaneous mutation.

The Pierces were married in 2020 and started their life together in northwest Indiana, where Chad had grown up and spent most of his adult life. He shares joint legal custody of Conner and Kylie with the children’s mother. Noah was born in 2021 at the height of the pandemic and was diagnosed with NF1 like his siblings and father. Three years ago, shortly after Noah was born, the family relocated to Westfield, IN, to be closer to Riley Hospital for Children and the specialists the children needed.

Suddenly, taking care of three special-needs kids nearly full-time required adjusting for the Pierces. Chad, who graduated from Purdue and earned a master’s degree from Penn State, is currently in management at LCA Vision. He is fortunate enough to work from home, which allows him to get the three kids to their daytime appointments. Lisa has an associate degree and works as a cash operations specialist at Carrington Mortgage. She’s also working on her online bachelor’s degree in accounting at UAGC. She was clear when she married Chad that she would not give up her career or educational pursuits. Still, she has naturally taken on more responsibility for getting the kids to their doctor and therapy appointments. She admits it’s a lot to handle some days, but she also finds it rewarding to be a new mom and stepmom. One of her favorite memories is when Conner was told his tumor was stabilizing and he was removed from chemotherapy. Another is the day Noah finally started walking.

Conner, now 12, currently attends Westfield Middle School. He spent many years on chemotherapy to control a tumor on his spine. He participated in a clinical trial of selumetinib, marketed as Koselugo, which shrinks certain NF1 tumors that can’t be removed entirely with surgery. He graduated from physical and occupational therapy at St. Vincent Pediatric Therapy.

Kylie, 8, attends Carey Ridge Elementary, where she has an IEP. She uses a speaker device in the classroom since she’s hard of hearing. She’s also a Girl Scout and, along with Conner, goes to Taekwondo.

Noah had trouble rolling over, didn’t crawl until he was about a year old, and struggled to walk until he received SMO (supra malleolar orthosis) and AFO (ankle-foot orthosis) supports. At 6 months, an MRI showed that he had a slight brain bleed. He was enrolled in First Steps, Indiana’s early intervention program for children with developmental delays. Now three years old, he is in developmental preschool and a co-teach classroom at Virginia F. Wood Early Learning Center in Westfield. He also receives occupational and speech therapy at St. Vincent Pediatric Therapy.

Despite the complex needs of the kids, Chad and Lisa try to keep their family life as normal as possible. They have a Shih Tzu Yorkie mix named Benji and a cat named Spunky. On Wednesdays, they have breakfast for dinner and one night a week is movie night. The kids have no dietary restrictions and love cheeseburgers and chicken nuggets like most youngsters. Since all three behave well in restaurants, the family can enjoy sit-down meals at Texas Roadhouse, their favorite spot. On Sundays, they attend St. Luke’s United Methodist Church in Indy.

The kids enjoy the outdoors, too, so there are field trips to Cool Creek and other parks. Two favorite family vacation destinations are Tennessee and Pensacola, FL.

Since four members of their family live with neurofibromatosis, the Pierces often get asked to participate in fundraising events and need to be careful to avoid over-committing. Earlier this year, they spoke at the Westfield Dance Marathon, which raised over $130,000 for Riley Hospital for Children. They recently joined the Indiana University Dance Marathon, which raised around $3 Million for Riley Hospital.

Currently, Chad is recovering from the surgical removal of a tumor behind his knee, a reminder that neurofibromatosis can be managed but not cured.

Lisa urges parents to get early intervention if they suspect their baby isn’t developing typically. “Get educated, ask questions, and remember Google is your friend,” she said. “Learn how to advocate for your child by networking.”

For anyone moving to the Westfield, IN area, Lisa recommends joining the Westfield Moms Facebook group to be more informed about resources available for parents with special needs children. She’s also in a book club and is a member of Women Building Friendships in Westfield.