Help Support Saylor’s Medical Journey

Hi, my name is Rhaylee, and I’m reaching out on behalf of my 2-year-old daughter, Saylor Hebert. Saylor is a bright and beautiful little girl, but she’s facing an incredibly difficult and complex medical journey that has included seizures, developmental delays, and a rare genetic disorder.

We’re asking for your help as Saylor needs ongoing and expensive testing, therapies, and specialist visits that are not covered by insurance.

Medical Concerns & Diagnosis

Saylor has been having seizure-like episodes since she was very young. These include frequent staring spells and episodes where her eyes roll upward and her head jerks back. They are happening more often and sometimes last up to 45 seconds.

She has been diagnosed with Autism through formal developmental testing and has significant delays in speech, motor skills, and social interaction. She doesn’t currently speak, rarely responds to her name, and has difficulty walking and balancing.

After genetic testing, doctors discovered that Saylor has a rare mutation in the CACNA1E gene, which is known to cause serious neurological problems, including seizures and developmental delays. She also has other uncertain gene variants that are still being studied, so her future medical needs are unclear.

Although her MRI and EEG (brain scan and brain wave test) have so far come back normal, her symptoms continue to worsen. Her medical team is now recommending more advanced testing, including a 3 day inpatient EEG, to capture what may be seizures or other neurological events.

Physical & Developmental Challenges

Saylor was born with bilateral club feet (both feet turned inwards), which required surgeries and bracing. She also has:

• Hip dysplasia (hip joint problems)

• Blue sclera (a sign of connective tissue disorder)

• A benign growth under her eye called a dermolipoma

• Eye alignment issues (exotropia)

• History of chronic infections, including MRSA and impetigo

• Delays in walking, talking, and coordination

Despite therapy, she struggles with everyday movements, speech, and understanding. She used to say “I love you,” but she no longer speaks.

❤️‍ What We’re Facing

Saylor is followed by multiple specialists in genetics, neurology, orthopedics, ophthalmology, and developmental pediatrics. She is currently in therapy several times a week (speech, physical, and occupational), and we are seeking private therapy to support her progress.

Her care involves:

• Regular specialist visits

• Multiple types of therapies weekly

• Advanced genetic testing

• Neurological testing (EEGs, MRIs, monitoring)

• Travel and medical costs not covered by insurance

We’re still searching for answers—and the right treatments—to help give Saylor the best chance at a healthy and full life.

How You Can Help

We’re asking for help covering:

• Out-of-pocket medical expenses

• Additional therapies and evaluations

• Travel and lodging for out-of-town appointments

• Equipment or aids that may be needed in the future

No amount is too small. If you can’t donate, please share Saylor’s story. Every bit of support helps us move closer to answers—and hope.

From the bottom of our hearts, thank you for caring about our sweet Saylor.

With gratitude,

Rhaylee, Trevor, Saylor & Family