Sarah
2026 Theme Child
Sarah is a remarkable young girl whose journey reflects resilience, strength, and joy despite significant medical and develop-mental challenges. Sarah's early life was marked by a complex medical history.
After a normal pregnancy with no signs of complications, The Ortiz Family received a notice that would change their lives, and the course of the pregnancy at 29 weeks gestation, Sarah was diagnosed with "Hydrops Fetalis" a severe, high-risk condition with the survival rate at that moment of 4% and the outcomes had a high complication for survivors.
Despite her condition, Sarah was born prematurely at 33 weeks gestation. Due to her early arrival and fragile condition, she required several surgeries, respiratory treatments, and extended stays in both the Neonatal Intensive Care Unit (NICU) and the Pediatric Intensive Care Unit (PICU) for her first six months of life.
During her time in the hospital, Sarah also was diagnosed with "Dysgenesis of the Corpus Callosum," meaning the structure that connects the two hemispheres of her brain is incomplete or damaged. This condition can impact coordination, communication, and overall neurological functioning. In addition, Sarah has bilateral hearing loss and bilateral optic nerve hypoplasia, both of which contribute to the complexity of her developmental needs. She is also dependent on a Gastrostomy tube (G-tube) for nutrition, reflecting ongoing challenges with feeding and medical care.
Sarah has an older brother, Aaron who was the CHEMPI 2020 Theme Child. Aaron was diagnosed with Autism Spectrum Disorder (ASD) when he was two years old. At the time that Sarah was hospitalized, Aaron was receiving Physical Therapy and Speech Therapy through the California-Hawaii Elks. Gaby (Sarah and Aaron's mom) knew the importance of early intervention in the development of her children and how difficult it would be to find the time to provide the best opportunities for both children. Fortunately, her Physical Therapist Megan, accepted Sarah immediately and began providing Therapy to Sarah at home through the California Elks Major Project during Sarah's first two years of life. Eventually Megan moved into a non-clinical role with the Major Project and Physical Therapy for Sarah was put on hold for a time.
At the same time, Aaron was also receiving Speech Therapy through the California-Hawaii Elks Major Project at home with his wonderful Therapist Toby Tamayo-Davis, who without hesitation agreed to take Sarah under her care when she was ready.
Since beginning Speech-Language Therapy on January 11, 2024, Sarah has made meaningful progress in her ability to communicate and engage with others. Her therapy program focuses on motor speech production, communication, language, and social skills, all of which are essential areas supporting her over-all development and quality of life.
Communication is another key area of focus. Sarah is learning to express her wants and needs through a combination of verbal attempts, gestures, and other supportive communication methods. Therapy emphasizes functional communication, helping her interact more effectively with caregivers and peers. Receptive and expressive language skills are also addressed, supporting her ability to understand language and to express her thoughts in ways that are meaningful and accessible to her.
Social skills are integrated throughout her Therapy. Sarah is learning to engage with others, respond to social cues, and participate in shared activities. These skills are essential for building relationships and fostering a sense of connection with those around her. Therapy sessions often include play-based and interactive activities that encourage these social exchanges in a natural and supportive environment.
A key factor in Sarah's progress has been the active involvement of her family in her Therapy. Her caregivers consistently participate in sessions, learn strategies, and carry over techniques into her daily routines at home. This collaboration ensures that Sarah receives consistent support across environments, reinforcing her skills and promoting continued growth. Family involvement not only strengthens her progress but also empowers her caregivers to be confident and effective partners in her development.
In 2023, in addition to Speech-Language Therapy, Sarah began receiving Physical Therapy with Mariel Gutierrez, again, the Major Project was there to support the Ortiz Family.
"Your kindness and generosity reach my family giving us hope and better quality of life. Our most sincere gratitude.
-The Ortiz Family
Physical Therapy focuses on improving Sarah's balance and walking abilities, helping her build strength, coordination, and independence. These skills allow her to better explore her environment and engage more fully in everyday activities.
For the last nine years, the Ortiz family has received the invaluable help of the CaliforniaHawaii Elks Major Project, with their excellent Therapists Megan, Toby, and Mariel, and the entire team with the donations that make this organization possible.
Sarah's continued progress would not be possible without access to specialized services and resources. Special thanks are extended to the California-Hawaii Elks Major Project for their generous donations and to ongoing support for children and their families. Their contributions help ensure that children like Sarah receive essential Therapy and interventions that might otherwise be out of reach. For many families facing complex medical and developmental challenges, this support provides not only services but also hope and opportunity for a brighter future.
Sarah's journey is one of perseverance, supported by a dedicated team of Therapists, medical providers, and her loving family. She has demonstrated encouraging growth in gross motor, communication, interaction, and engagement. While her path includes ongoing challenges, her progress highlights the importance of consistency and a collaborative approach to care.
Despite these obstacles, Sarah is a sweet and loving child who brings joy to those around her. She has a special love for music, which captures her attention and brings out her bright personality. Music not only makes her happy but also serves as a valuable therapeutic tool, encouraging vocalization, engage-ment and interaction. Her gentle nature and positive spirit shine through her daily interactions and Therapy sessions.
With her sweet personality, love of music, and strong support system, Sarah continues to make meaningful strides. Her story reflects the power of compassion, teamwork, and access to resources in helping children reach their fullest potential.
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