Meet Chloe – Our Bright Light in a World of Challenges

Chloe is a remarkable little girl whose strength, joy, and resilience inspire everyone who knows her. She was born with two extremely rare genetic conditions—Pilarowski Bjornsson Syndrome and Mowat-Wilson Syndrome—both complex neurodevelopmental disorders that affect nearly every area of her life. These syndromes cause global developmental delays, intellectual disabilities, seizures, muscle weakness (hypotonia), growth delays, autism, and speech apraxia. Chloe also lives with several additional medical challenges, including  mixed receptive-expressive language disorder, Chiari 1 malformation, obstructive sleep apnea, dysphagia, restless leg syndrome, optic nerve hypoplasia, and severe sleep disturbances.

Despite facing so many obstacles, Chloe radiates happiness. She loves The Cat in the Hat, flipping through (and sometimes tearing) her favorite books, stacking and lining up toys, and exploring the outdoors—collecting sticks, picking flowers, and watching airplanes in the sky. She adores her stuffed sloth, swinging, coloring (on any surface she can find!), and watching herself giggle in the mirror. Her joyful spirit shines brightly through every challenge.

Chloe requires 24/7 care and attends a special needs school where she receives daily physical, occupational, speech, feeding, developmental, and social therapies. She has no awareness of danger and tends to wander or elope, especially toward water, which makes constant supervision essential. Nighttime is equally challenging—between her sleep apnea, night terrors, and restless legs, she rarely gets a full night’s rest. Specialized equipment like a SleepSafe bed helps keep her safe while she sleeps, and throughout the day she depends on sensory tools—weighted vests, swings, and fidgets—to help her stay calm and regulated.

To help Chloe live more safely and independently, her family is fundraising for a specially trained service dog. This companion will help alert to danger, interrupt unsafe behaviors, provide deep pressure therapy for sensory regulation, and offer comfort and stability during daily activities and medical visits.

Chloe’s doctors often say she is truly one of a kind. Her family, friends, teachers, and medical team agree—“We are living in Chloe’s world, and we are here for it.” Your support will help give Chloe the safety, comfort, and companionship she deserves as she continues to grow and thrive in her beautiful, one-of-a-kind way.

Training a service dog to meet our child’s requirements can be very costly. On average it costs between $40,000-60,000 to raise, train, and place a service dog at 4 Paws for Ability. While 4 Paws for Ability fundraises to help cover a significant portion of this cost, families are tasked with raising $20,000 of that amount or $23,000 if receiving a poodle, doodle or papillon. We hope that we can receive assistance from our beloved family and friends to help make our service dog dream a reality.