When Jaylani Jackson was born, her mother, Florence Sanchez, was immediately struck by the radiant smile on her baby’s face, sensing she was someone truly special. But within just three days, concern arose when Jaylani wasn’t passing bowel movements, signaling that something was deeply wrong.
After being closely monitored in the ICU, Jaylani was diagnosed with Hirschsprung’s disease, a rare condition where nerve cells are missing in the colon, causing severe bowel obstruction. The diagnosis was overwhelming, and the first few months of her life were spent undergoing intense monitoring and care to keep her stable.
“Jaylani spent three months in the ICU after that initial diagnosis, which was terrifying,” Sanchez recalls, highlighting the gravity of the early weeks. Over the years, Jaylani would undergo more than 17 procedures to manage her condition, each one adding to the emotional and physical toll on the family.
Despite multiple surgeries and consultations across South Florida, Sanchez and Jaylani struggled to find a treatment approach that addressed the persistent bowel issues. Several hospitals suggested that an ostomy bag was the only solution, but Sanchez refused to accept this outcome without exploring every possible option.
Eventually, they sought care at Holtz Children’s Hospital, where Jaylani met Dr. Miguel Saps, chief of pediatric gastroenterology, hepatology, and nutrition. Dr. Saps reviewed her case and recommended a novel approach tailored to Jaylani’s specific complications, offering a new path forward that could dramatically improve her quality of life.
Typically, surgery for Hirschsprung’s disease involves removing the affected portion of the colon, yet even when done correctly, up to 60 percent of patients continue to experience bowel difficulties. Jaylani had already undergone this standard surgery, but her symptoms persisted, indicating a deeper, unresolved problem affecting her bowel control.
To pinpoint the source, the team performed an anorectal manometry and an exam under anesthesia, assessing muscle coordination, sensation, and the ability to control bowel movements. The tests revealed that Jaylani’s dentate line was damaged, preventing her from sensing stool and leading to frequent accidents that affected her daily life.
With a clear understanding of the problem, the team recommended the next step: a Malone appendicostomy, a surgical procedure creating a small tube through which the colon could be flushed daily. Dr. Eduardo Alfonso Perez, a pediatric surgeon, performed the procedure in September 2020, supported by a multidisciplinary team that ensured every detail of the operation was meticulously managed.
After spending a few nights in the hospital, Jaylani was able to go home, beginning a new chapter in her life with confidence and independence. Sanchez recalls, “From the moment we met the team at Holtz Children’s, we knew we were in the right place—they listened, explained everything, and truly cared about Jaylani as a person, not just a patient.”
Today, at eight years old, Jaylani lives free from the constant fear of accidents and complications that once dominated her life. Each night, she and her mother perform the flush through the tube, maintaining her health while keeping her active and confident in daily activities.
Jaylani now goes to school, swims, travels, showers normally, and participates in the same activities as other children, embracing life fully despite her ongoing medical routine. To help her feel comfortable, she and her mom created a teddy bear-shaped cover for the tube, blending medical care with emotional reassurance and normalcy.
Beyond her own recovery, Jaylani has become an advocate, using her voice and social media platforms to educate families about Hirschsprung’s disease. She shares her story, helping other children and parents understand that a full, joyful life is possible even with a rare congenital condition.
“I didn’t ask to have this disease, but just because I have it, doesn’t mean I have to give up,” Jaylani says, reflecting a resilience and optimism beyond her years. Her story illustrates not only the power of advanced pediatric care but also the impact of support, advocacy, and determination in shaping the future for children with complex medical conditions.
Holtz Children’s Hospital provided expert care that addressed Jaylani’s medical challenges with precision and compassion, ensuring her condition could be managed effectively. The collaboration between surgeons, gastroenterologists, nurses, and therapists was critical in transforming her life, allowing her to thrive at home and participate fully in childhood experiences.
Each milestone, from holding a bottle to attending school and participating in sports, became a celebration of medical innovation, teamwork, and personal courage. Every success reinforced Jaylani’s confidence, giving her a sense of independence and control that had been limited for much of her early life.
Sanchez emphasizes the importance of personalized care, explaining how the team’s approach treated Jaylani as a whole child, not merely a patient with a diagnosis. This focus on empathy, communication, and holistic management helped reduce fear and anxiety for both mother and daughter throughout the process.
Jaylani’s story also demonstrates the resilience of children facing congenital conditions and the profound difference that expert care can make. With the guidance of specialized teams, she learned to navigate her medical routine while maintaining a normal childhood experience filled with play, learning, and joy.
Her journey is a testament to the power of medical innovation and advocacy, showing that even rare conditions can be managed successfully with dedication and expertise. Every procedure, consultation, and follow-up contributed to the remarkable outcomes she enjoys today.
Now thriving at home, Jaylani continues to visit Holtz Children’s for regular monitoring, ensuring her health is maintained and her growth remains steady. Her pacemaker and surgical outcomes are carefully tracked, preventing complications and giving her parents peace of mind.
The impact of this care extends beyond Jaylani, providing hope and guidance to other families navigating similar medical challenges. Her story inspires parents to seek second opinions, advocate for their children, and embrace innovative solutions when standard approaches fall short.
Through all of her procedures, challenges, and recoveries, Jaylani’s spirit remained bright, cheerful, and courageous. Her determination to live life fully and embrace her experiences demonstrates remarkable strength for a child who faced so many obstacles early in life.
Jaylani’s mother, Sanchez, continues to celebrate every success alongside her daughter, knowing that each day represents a victory over a rare congenital condition. Together, they demonstrate resilience, advocacy, and the power of love and expert care to transform lives.