Who is Scarlett Holder? Scarlett is one of 22-month-old twins, a little firecracker that is always on the move and never gives up.
But she needs help. Scarlett is unable to walk. Not for lack of trying. She is determined and strong, but she doesn’t have the physical structure to get her walking.
Her full story:
During pregnancy, doctors noticed that Scarlett's legs and feet stayed in an unusual position throughout every ultrasound—her legs crisscrossed, with the tops of her feet resting against her shins. They also noted short femurs measuring below the 1st percentile, a flat nose bridge and other skeletal differences. Arthrogryposis with a chromosomal concern was initially suspected, along with dwarfism, skeletal dysplasia and other possibilities. Genetic testing came back with no findings.
Scarlett and Addie were born at 36 weeks on October 14, 2024 in Texas, and both had a stay in the NICU. (Addie was being treated for pulmonary stenosis, a narrow heart valve that was blocking blood flow to her lungs. She had a successful procedure using a tiny balloon to open the valve.)
When doctors examined Scarlett, it was clear she had unique features, but the pediatric orthopedic surgeon ultimately decided she did not have Arthrogryposis.
Scarlett was referred to Scottish Rite in Dallas, where doctors again acknowledged that something was going on, but there was no clear answer. After moving to Idaho, Scarlett's case was transferred to Shriners in Salt Lake City. Again, doctors recognized something was unusual, but recommended that the family "wait and see."
Whitney got Scarlett into physical therapy, where she shined. Her PT felt that something could be done now rather than waiting and suggested seeing a local orthopedic surgeon. Unfortunately, that doctor told Whitney to "stick with Shriners" and that she was "doing more harm to your daughter by searching for answers."
As a mother trying to do what was best for her daughter, Whitney was devastated. She left that appointment in tears and questioning her maternal instincts.
Thankfully, Scarlett's PT continued to advocate for her. Scarlett has always had so much determination to walk. She wants to walk so badly, but physically, her body won't allow it. Through orthopedic and neurological appointments, physical therapy, two sets of braces, a walker, CTs and MRIs—with no answers—Whitney kept searching. She wouldn't give up trying to find someone who could help Scarlett now, not later.
Finally Getting a Diagnosis
When Arthrogryposis was first suspected, Whitney researched specialists and found Dr. Feldman at Paley Orthopedic & Spine Institute in West Palm Beach, Florida and recently met with him.
During their virtual appointment, Dr. Feldman made it clear that something needed to be done and that he was determined to find the answers. Whitney and Chad were relieved to finally find someone willing to look deeper.
In July, Whitney and Scarlett flew to Florida for an in-person visit. Within 15 minutes, they had more answers than they had received in the previous two years.
Dr. Feldman immediately knew Scarlett has a tethered spinal cord, which contributes to the tightness in her lower body. He also discovered that both of Scarlett's kneecaps are completely dislocated.
On July 30, 2026, Scarlett was diagnosed with Rhizomelic Dysplasia, Congenital Dislocation of the Patella and a Tethered Spinal Cord. Further genetic testing and scans have also been ordered to investigate an additional possible diagnosis.
Treatment
Dr. Feldman made it clear: they need to start now.
In September, Scarlett will have her first surgery with neurosurgeon Dr. Asadi to release her spinal cord. Two weeks later, she will have another surgery to fully reconstruct both knees. Without these surgeries, Scarlett will not have the ability to support her weight and walk independently, and damage will continue to occur.
Thankfully, her doctor is optimistic that this plan will give her the physical ability she needs to begin catching up developmentally.
Plans & Expenses
Because Scarlett's specialists and hospital are in Florida, Whitney and Scarlett will travel across the country for the care they've been waiting for. Chad will stay in Idaho with Trace and Addie so he can continue working full-time and attend his military Reserve drill weekends.
Thankfully, Tricare will cover a large portion of the medical costs. The family's remaining expenses, however, are significant and continue to add up with a huge chunk of it going toward travel.
They will need to be in West Palm Beach for 35+ days for surgery, recovery and follow-up appointments. They have reached out to local support homes, but they are full and unable to accommodate their needs. They also explored VA lodging, but those services are limited to situations where the service member is the one receiving care.
The family has found lodging through a special discounted rate for Paley patients, estimated at $6,000–$7,000. Airfare will be approximately $1,500 roundtrip. Scarlett qualifies as a lap infant on the trip to Florida, but will turn two before the return trip and will need her own seat and additional space while still recovering from surgery.
There will also be expenses for food, ground transportation, additional travel for follow-up care, leg braces, physical therapy and other specialist services as Scarlett heals.
A Burden No One Wants to Bear
Medical expenses are something many families face, but the financial stress is especially difficult when it comes alongside the uncertainty of a child's health and development.
The Holder family recently planted their roots in Idaho to be closer to family and bought a home they had been saving and working toward for years. Chad works full-time and served nearly 10 years on active duty in the Navy before continuing his service in the Reserves. Whitney manages the day-to-day needs of their three children, including appointments, therapies, insurance calls and navigating diagnoses and care.
They work hard to provide for their family, but this is more than they can take on alone.
Ways to Help
Friends and family who know about Scarlett's situation have continued to ask how they can help. Whitney and Chad were hesitant to accept financial help, but they also know the stress of these expenses will continue to build.
Their focus is on getting Scarlett the care she's been waiting for and giving her the opportunity to reach her full potential and take her first steps.
Funds raised will go directly toward the family's travel, lodging, recovery and other expenses associated with Scarlett's treatment. If you'd like to donate, any amount and every dollar is appreciated. You can also help by sharing Scarlett's story, sending the family prayers and providing words of support as Scarlett takes this next step.
