Initial Presentation and Patient Goals

In 2024, an inspiring patient with Vici Syndrome—a rare genetic disorder affecting fewer than a hundred people worldwide—came to us at Orthotics Plus. 

This young person, who had been walking as recently as August the previous year, had experienced a decline in mobility and muscle control, rendering them wheelchair-bound and experiencing severe spasticity. 

The family sought our help to reduce the left-side plantar flexion contracture and enable the person to begin weight-bearing once more. The existing Ankle Foot Orthoses (AFOs) were no longer suitable, failing to accommodate the changes in the condition, including the compromised trunk control.

Understanding Vici Syndrome

Vici Syndrome primarily affects the corpus callosum in the brain, impacting motor functions across the body. 

Patients exhibit varying symptoms, including muscle weakness, loss of control, and changes in muscle tone. 

Our patient presented with high muscle tone in the lower left limb and low tone in the upper body, except for the right wrist, which also had high tone.

Developing a Treatment Plan

Given the severe plantar flexion contracture, standing was incredibly challenging for our patient. 

The patient’s toes pointed so acutely that they significantly reduced his foot’s weight-bearing surface, leading to extreme leg length discrepancies.

Our initial goal was to bring his ankle closer to a neutral position, or about 90 degrees, which would facilitate the creation of new AFOs aimed at enabling him to stand and walk.

We designed AFOs with dynamic ankle joints to apply a gradual corrective force to his ankle, reducing the contracture over time.

Implementation and Progress

After carefully fitting the new AFOs, the patient began a slow introduction phase to ensure they did not cause pressure sores—a high risk due to the extended wear time required. 

They started by wearing the AFOs for 3 hours at a time, followed by a half-hour break for skin assessment. 

Over the course of a week, the patient successfully increased wear time to 8 hours at a stretch, both day and night, which is a positive initial sign.

While the patient has not yet achieved the goal of standing, we are preparing a different version of the AFOs designed specifically for standing. These will account for the current heel-off-the-ground position, providing the support needed for weight-bearing.

Measuring Progress

Progress is measured periodically using a goniometer to track changes in the ankle’s range of motion. 

Our physio partner, who see the patient more frequently, records these measurements in a dedicated booklet to monitor improvements and adjust treatment as needed.

Collaboration and Funding

As an NDIS-funded patient, we communicated extensively with the National Disability Insurance Scheme (NDIS) and his mother, who manages the funds. 

We provided detailed quotes and explanations for the prescribed devices to align with his NDIS goals, which include regaining the ability to stand and, potentially, walk.

Orthotics Plus is a registered NDIS provider and we advocate for choice and control.

Advice for Families

For parents of children with Vici Syndrome, early intervention and consistent physiotherapy are vital. 

Keeping the child as mobile as possible through therapy, AFOs, standing frames, and walking aids can help maintain and improve their mobility. 

Awareness of symptoms, such as misshaped skulls (plagiocephaly), and early diagnosis are critical, as most children with this condition are diagnosed before the age of three and do not typically live beyond ten years. 

Our wonderful patient is currently the oldest living individual with Vici Syndrome and inspires the lives of many.

At Orthotics Plus, we are committed to providing the best possible support and care for our patients, helping them achieve their goals and improve their quality of life, no matter the challenges they face.