In Support of Kayla’s Journey
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Help Kayla Reach Her Full Potential
At just 18 months old, our daughter, Kayla, has already overcome more than most people face in a lifetime. She was born with severe infantile Hypophosphatasia (HPP), a rare life-threatening genetic disorder that prevents her body from properly mineralizing her bones, leaving them extremely fragile, and affecting her overall development. Kayla also has a brachial plexus injury, which impacts the movement and strength of her right arm, and hip and foot abnormalities that will require future surgeries.
Kayla is now receiving Strensiq, a life-changing enzyme replacement therapy specifically for her bone disorder, which she will be on for the rest of her life. Although Strensiq addresses the bone mineralization issue, intensive therapies are also crucial to teach her how to use her body and gain strength. The early months of treatment represent a critical window when children with HPP can experience significant functional gains, and pairing this with intensive therapy maximizes her progress during this important period. Kayla is currently approaching month 8 of treatment, and we're doing everything we can to help her make the most of this opportunity. Today, despite her incredible determination, Kayla is significantly motor delayed - she achieved rolling over at 18 months old, a milestone typically reached between 4 and 6 months.
She requires weekly and intensive physical therapy, occupational therapy, speech and feeding therapy, along with specialized equipment and ongoing medical care. We also travel throughout Central Florida for appointments and therapies, driving nearly 400 miles every week to access the specialists she needs. With her appointment and therapy schedule, it became too much for myself, Katelin, Kayla's mom, to keep taking her while working full-time. Kayla's dad, Kyle, courageously stepped away from his career to take on the responsibility, leaving us with one income.
Despite all the medical and routine complexities, Kayla is a bright, sassy, and determined little girl. She loves to play with her older sister, Kennedy, going exploring in her stroller, and building towers with blocks although I think she likes knocking them over more! Her laugh and smile light up the room and give us the determination to keep pushing forward.
Despite all the medical and routine complexities, Kayla is a bright, sassy, and determined little girl. She loves to play with her older sister, Kennedy, going exploring in her stroller, and building towers with blocks although I think she likes knocking them over more! Her laugh and smile light up the room and give us the determination to keep pushing forward.
To give Kayla every chance to thrive, her medical team has recommended additional therapies, including:
- Intensive therapy programs, which typically cost $7,000 to $10,000 per session. This involves 4 hours of therapy everyday (M-F) for 3 weeks and recommended every 2 to 4 months.
- Red light/Low-level laser therapy that uses specific wavelengths to stimulate cellular function.
- Neuromuscular Electrical Stimulation (NMES) therapy uses a special device to send electrical impulses to motor nerves, forcing the muscle to contract. With her muscle weakness this is necessary to get the muscles moving when she can't.
- Stem cell treatments, which can range from $9,000 to $20,000 depending on the provider and treatment protocol.
- Travel expenses, lodging, assistive devices, and other out-of-pocket medical costs that continue to add up as we pursue every opportunity to help Kayla reach her fullest potential.
Every donation, no matter the size, helps provide access to therapies that insurance often does not cover. If you're unable to give financially, sharing Kayla's story with others and praying for Kayla's continued progress, strength for our family, and wisdom to make necessary medical decisions are all meaningful and appreciative to us.
Thank you for believing in Kayla and helping us give her every opportunity to grow stronger, gain new skills, and experience the childhood she deserves. We look forward to providing updates through Kayla's journey and sharing when she's reached new milestones!
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- Created Aug 06, 2026
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- Therapies, Treatment & Equipment
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