Still Me: Vanessa’s Journey of Strength, Surgery and Self-Acceptance

Vanessa’s parents knew their daughter’s path would be unique when she was born with a tethered spinal cord – a condition where the spinal cord becomes attached to tissue around it, preventing it from moving freely within the spinal canal.

The condition left her with leg and muscle weakness that progressed over time. Coupled with muscular dystrophy, a group of rare diseases that cause muscle weakness or loss of muscle mass, Vanessa’s parents knew she’d need special treatment.

Since beginning care at Shriners Children’s Northern California when she was 2, her family has felt supported every step of the way.

Now 15, Vanessa is a confident teenager with big dreams and a deep appreciation for the team that helped her navigate life successfully despite multiple health challenges.

A Lifelong Partnership in Care

While there is no cure for her muscular dystrophy, individualized treatments can slow its progression and help with a patient’s symptoms.

The ultimate goal of Vanessa’s care team at Shriners Children’s was to maximize her function and make everyday tasks easier.

Shriners Children’s became a second home for Vanessa, providing surgeries, physical therapy and adaptive equipment to help her thrive. One of her earliest memories is of her first major surgery in fourth grade to correct her knees, which were severely contracted.

“Vanessa was developing knee flection contractures – inability to straighten out the knee completely,” said Assistant Chief of Orthopedics Vedant Kulkarni, M.D. “That was impacting her ability to walk longer distances. We used a minimally-invasive technique to guide the growth of her knee to help straighten it out. That enabled her to have straighter knees, allowing her to have greater endurance for longer distances.”

“I was terrified,” Vanessa said. But the kindness of the staff, including a therapy dog visit before her procedure, helped ease her fears. Dr. Kulkarni and the nursing team checked on her often. “It felt like a friend was there,” she said.

A Surprise Diagnosis and a Tough Decision

During a routine checkup in sixth grade, Dr. Kulkarni ordered a back X-ray for Vanessa and discovered she also had severe scoliosis. Vanessa’s shoulders were uneven, something her parents had chalked up to poor posture. But the curve in her spine was significant and required immediate action.

She was fitted for a back brace, which she had to wear more than 20 hours a day. “It felt like a turtle shell,” she said. “It was hot, heavy, and made it even harder to move.”

But after over a year of bracing, her curve hadn’t improved enough. Surgery was the next step. Vanessa struggled with fear – not just of the operation, but of feeling different.

“I didn’t want to stand out,” she said. But with encouragement from her care team, she realized, “It doesn’t matter if you’re different; what matters is who you are.”

Surgery and an Unexpected Challenge

Vanessa received spinal fusion surgery, which is recommended to correct a curve or stop it from progressing. Fusion could be recommended for a child if they are still growing and their curve is more severe, or if they have stopped growing and the spine needs to be stabilized.

“Many muscular dystrophies are progressive,” said Dr. Kulkarni. “Common issues are related to the spine, such as scoliosis. This presents problems with seating, breathing and pain.”

After surgery, she was scared to move, even when nurses gently repositioned her. Recovery was tough, but small gestures – like the staff noticing she’d only eat chicken tenders and adjusting her meals – made her feel seen.

Five days post-op, she took her first steps. “I was afraid I’d fall,” she said. But with nurses guiding her, she grew more confident.

Then, a month later, disaster struck: Her incision became infected. According to Vanessa, the recovery for the infection was worse than the surgery itself. It included IV antibiotics, painful drains and sleepless nights. Yet through it all, her care team ensured she understood every step of her treatment.

Finding Strength on and off the Court

By seventh grade, Vanessa had not only healed, but she’d also discovered a new passion: wheelchair basketball. The sport gave her confidence, and Shriners Children’s staff cheered her on, remembering her hobbies and checking in on her progress. She also met fellow Shriners Children’s Northern California patient Michael during practices, and the two sparked a friendship.

Now, she’s focused on a future in STEM, hoping to help others the way she’s been supported.

“I want people to know that disabilities don’t define you,” she said. “You’re still you, no matter what.”