Rise

Program: KCNQ2

Nolan’s Story:

Nolan was born February 03, 2018. He was blue in color, began seizing almost immediately, and was quickly transferred to a level four NICU. On February 20, his parents received Nolan’s heartbreaking diagnosis – KCNQ2 Developmental and Epileptic Encephalopathy (KCNQ2-DEE). After an arduous three-and-a-half-month stint in the NICU, Nolan fought and put himself in a position to finally go home on May 10, 2018, with his parents and almost two-year-old brother, Thomas.

Nolan is severely disabled and globally delayed, and 100% dependent on caregivers. He is nonverbal and blind (CVI), and he also cannot independently sit up, crawl, stand, or walk. Nolan is fed through a gastrostomy tube, has active seizures and dystonia, requires frequent suctioning, and wears a CPAP nightly. Nolan is on a plethora of medications and needs frequent therapies. He is completely non-ambulatory, requiring special medical durable seating equipment and a wheelchair. His parents have been told during his numerous hospitalizations to prepare for the possibility of Nolan not going home. Fortunately, Nolan has repeatedly defied the odds and persevered, showing grit, incredible strength and a will to live.

Nolan is a happy little boy who loves his family and adventure. He enjoys his trips to the beach, mountain, or parks. Nolan prefers to be outside when the weather is just right and loves the feel of a cool breeze on his face. He has diverse musical tastes. He is cheeky, with a great sense of humor. He attends a special needs school where he has lots of friends. He loves to cuddle. But most of all, Nolan loves his big brother.

If you want to see the purest definition of love, all you need do is watch Thomas with Nolan. Thomas is Nolan’s best friend and biggest cheerleader. If you were to ask him what he would like most in the world, his reply would invariably be to make his brother better.

Nolan continues to surprise his medical team and family with his fortitude. If given the right modern treatment, no one can say what Nolan may be able to achieve. One thing is certain, however – Thomas will hold his hand every step of the way.