Meet Gage! He is a nine-year-old boy who loves gaming, Hot Wheels, and Lego. You wouldn’t know from his photos, but Gage was diagnosed with Neurofibromatosis type 1 (NF1) at birth. NF1 is a genetic condition that causes tumors to grow along the nerves. At this time, there's currently no cure and very few treatments.
Gage’s parents shared how terrifying and confusing it was to learn what this disease meant for their child. Heather, Gage’s mom, shared how at times a feeling of hopelessness washes over her with how little research is funded for this disease.
“My fear never goes away – from one scan to the next, I hold my breath waiting for the next difficult news.”
Gage has his blood drawn every 3 months, receives X-ray scans every six months, and an MRI of his entire body every year—in addition to regular optometry, occupational therapy, behavior therapy, and clinical visits.
NF1 primarily affects the nervous system, but the problems caused by the disease are far-reaching. Gage has also been diagnosed with scoliosis and ADHD, both common in children living with NF1.
Early on in Gage’s care, he was introduced to AdventHealth for Children’s Adler Family Coordinated Care for Kids Program. His physicians and care team give him the time and space for Gage to be Gage.
Heather shared: “he knows he can be himself around the AdventHealth team. Everyone from the nurses, Child Life Team, doctors and staff make sure that he is seen as a person, not just a patient. They allow me and even Gage to be part of the conversation, ask questions and take the time to listen.”
AdventHealth for Children’s Coordinate Care for Kids (CCK) Program serves as the medical home for children who have a chronic condition expected to last longer than one year, and a complex condition requiring more than two sub-specialties.
Typically, the process of diagnosing and developing a treatment plan for children with complex illnesses can take weeks or months, as the patient meets with each doctor separately and the doctors confer about treatment. AdventHealth for Children created a seamless process with a team of health care experts who review the child’s diagnosis and create a treatment plan in one location, at one time.
“We choose to stay here specifically for his care. Gage consistently sees about 10 different physicians, and everyone communicates with one another to find the best course of action. They even directly communicate with caregivers including schools and counselors to ensure they’re providing the right care that’s needed.”
Gage’s mom continued to share how the Child Life Team creates an environment of peace (and even joy) as they tend to a disease that Gage will endure for the rest of his life.
Raising a child is hard, but raising a child in the hospital is even more difficult. Heather explained how “life is chaotic enough with his diagnosis. If we didn’t have the convenience and consistency of a centralized team when it comes to big decisions – I just can’t quantify the amount of worry that’s lifted regarding my child, his treatment, and the connection with all his docs.”
This type of extensive, specialized care relies on philanthropy to cover the cost of the intense level care that is not supported through regular insurance reimbursement.
“It’s paramount – CCK enhances my ability to focus on my child. I can be there for him,” Heather explained.
Your support will ensure families, like Gage’s, are cared for with personalized treatment options, local community resources and support groups, even helping with transportation to their child’s appointments.
Click here to learn how you can give back to support the CCK program today.
