Amarlia
Kayla Varas, Care Coordinator – LCH
Amarlia is a joyful 6-year-old living with sickle cell disease and a speech delay.
When Amarlia was first diagnosed with sickle cell, her mother, Claudine Nelson, whose older daughter also lives with the disease, remembers thinking, “I have to go through this again.” While more prepared the second time, Claudine carries the emotional weight of managing a chronic condition for two children every day.
Living with sickle cell disease can bring uncertainty with pain crises, the need for specialist care and fear of the unexpected. Even when things are stable, constant vigilance is required.
The family first came to CDTC through a relative’s recommendation. Claudine “loves coming to CDTC” and values the comprehensive, compassionate care her children receive in the primary care clinic and from Dr. LaFrance.
Amarlia is supported through CDTC’s Lift a Child to Health (LCH) program, which provides care coordination that has made a meaningful difference for the family. For over three years, her care coordinator has helped ease the burden of managing Amarlia’s complex care needs by coordinating referrals to specialists, ensuring speech therapy is in place, connecting the family to helpful community resources and providing appointment reminders. Amarlia also receives dental care at CDTC by Dr. Oliveria. This wraparound care allows Claudine to focus on being a mom, rather than navigating systems alone.
Through it all, Amarlia is thriving. She does well in school and continues to make meaningful progress in her weekly speech therapy. She also sees a hematologist monthly and an ophthalmologist to monitor her eyesight. Claudine is grateful that Amarlia has remained relatively stable even after a recent ER visit due to a sickle cell crisis.
When asked what advice she would give other families, Claudine said not to define a child by their diagnosis, but to see it as just one part of who they are. She believes this mindset helps children grow with confidence and resilience. Amarlia reflects that resilience every day. She is kind, creative and loves connecting with others. With strong family support and coordinated care, Amarlia is not defined by her diagnosis, she is empowered to thrive.
About our Hero of the Month
Each month, CDTC staff nominate one of our children as our Hero of the Month. These special boys and girls are heroes in our eyes. They show strength, perseverance, determination and a positive outlook while facing great challenges.
Their stories are powerful and heartwarming and reflect the impact CDTC and you, our community, has on their daily lives.
A visit to our clinic is more than a doctor’s appointment for a child with special healthcare needs.
However, insurance doesn’t cover every expense, which is why your support makes such a difference.