Vanessa

Nominated by Rosalynn Sotomayor, Care Coordinator – ECHO

Vanessa’s journey began long before her family brought her home. Born prematurely at just 29 weeks, she spent several months in the NICU before finally being discharged. From the very beginning, Vanessa faced significant medical challenges that would require constant care, ongoing medical support and extraordinary strength from her entire family.

Now 18 years old, Vanessa lives with Cerebral Palsy, seizures, scoliosis and complex medical needs. She is nonverbal, wheelchair-bound and dependent on a g-tube, a medical device that is inserted directly into the stomach, for all nutrition and medications. Her care requires around-the-clock attention and coordination among multiple specialists and includes therapies, medications and medical services.

For Vanessa’s mother, caring for her daughter has meant managing a demanding medical routine every single day, administering medications through her g-tube, monitoring specialized nutrition plans, attending countless appointments and advocating continuously for Vanessa’s needs. The impact of Vanessa’s care has touched the entire family. Her sisters grew up helping support Vanessa and naturally became part of her caregiving team, learning compassion, patience and resilience along the way.

Since first coming to CDTC’s primary care clinic in September 2008, Vanessa and her family found more than healthcare, they found a trusted medical home. Vanessa’s mother describes CDTC as different from a typical doctor’s office because the physicians and staff truly take the time to listen, understand and care for children with complex medical conditions.

Over the years, CDTC’s coordinated, family-centered approach has helped Vanessa access the specialized medical care and support she needs to thrive. Following her NICU discharge, Vanessa participated in CDTC’s Early Steps program, where service coordinators connected the family to critical developmental therapies and early intervention services during her earliest years.

Vanessa also became involved in CDTC’s ECHO program, which provided ongoing medical care coordination and support for the family. Through ECHO, care coordinators helped connect Vanessa with specialists such as gastroenterology, pulmonology, neurology and cardiology, while also assisting with referrals, medications, medical equipment and access to valuable community resources.

For families navigating the overwhelming realities of caring for a medically complex child, having a dedicated team to help coordinate care can make an enormous difference.CDTC helped transform what could have been an isolating journey into one filled with partnership, guidance and hope.