“As a mom, you’re always thinking, what if something happens to me?”
Meet Derek
Derek lives with spina bifida, hydrocephalus, a neurogenic bowel and bladder, and bi-lateral clubbed feet.
Wendy Longwell and her family live on a five-acre farm in Shingletown, CA. On this day, she was bottle-feeding newborn piglets. (Photo: Deanne Fitzmaurice)
Wendy’s son Derek has had 42 surgeries in his life. His recent surgeries have helped relieve pressure from fluid in his brain, but he may need hip surgery soon as well. (Photo: Deanne Fitzmaurice)
Derek turned 21 in 2016. Wendy has spent months transitioning him out of his entire network of pediatric care to adult care. She has also become his legal conservator so that she can continue to authorize his medical care. (Photo: Deanne Fitzmaurice)
Derek with two of the family's 11 domesticated pets: Baby, the dog, and Wilbur, the pot-bellied pig. Derek gets distracted easily and has trouble with short-term memory. When Wendy isn’t home, her mother comes to stay with him. (Photo: Deanne Fitzmaurice)
The Longwells have 78 farm animals. Derek cares for all of the rabbits and horses, while Wendy tends to the pigs, goats, ducks and other birds. (Photo: Deanne Fitzmaurice)
Derek with their farm goats. “She’s my girl,” he says about Precious, a goat that sometimes sits in his lap. (Photo: Deanne Fitzmaurice)
Derek has recently transitioned to adult specialists at Stanford University Medical Center, five hours from Shingletown. (Photo: Deanne Fitzmaurice)
Derek volunteers once a week at Rowell Family Empowerment of Northern California in Redding, CA. Wendy works as a parent consultant at this support organization for families of children with special needs. “She’s an incredible woman,” Derek says about his mom. “She’s my backbone. I wouldn’t be able to do it by myself.” (Photo: Deanne Fitzmaurice)
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Derek's care map
Derek's “care map,” which illustrates the complicated web of medical care and coverage, as well as educational and support services needed for children with medical complexity and their families.