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A young girl with Down syndrome and other special health care needs and her mother hold up a copy of her care map.

Meet Isabella from San Marcos, CA.

Isabella lives with Down syndrome, developmental delays, and a heart defect.

Isabella Villafaña

April Villafaña and her daughter, Isabella, at their home in San Marcos, CA. (Photo: Deanne Fitzmaurice)


Isabella Villafaña

Isabella has experienced developmental delays,and April says it’s difficult to communicate with her. She sat up at 11 months, crawled at 14 months, and walked when she was two-and-a-half years old. Most typically developing babies reach these milestones at 6 months, 10 months and 18 months. (Photo: Deanne Fitzmaurice)


Isabella Villafaña

Isabella’s paperwork for speech, occupational, physical and horse riding therapy, specialty care in cardiology, endocrinology, nutrition, genetics, audiology, ENT and optometry, along with her needs-based educational plan. (Photo: Deanne Fitzmaurice)


Isabella Villafaña

April worked in interior design before she gave birth to Isabella four years ago. She wanted to return to work, but now has to stay home to care for her daughter. Isabella is not potty trained, and needs special meals prepared for her. “Most daycares do not have the staff or training to care for kids like Isabella. And it’s very difficult to find a babysitter to care for a special needs child at home, too.” April gets 12 hours of respite time per month, which she uses up quickly on her own medical appointments. (Photo: Deanne Fitzmaurice)


Isabella Villafaña

Isabella rides her favorite horse, Mary, at Reins Therapeutic Horsemanship Program in Fallbrook, CA. Horse therapy has helped Isabella strengthen her muscles. (Photo: Deanne Fitzmaurice)


Isabella had open-heart surgery to correct a heart defect when she was 6 months old. She may need another surgery in her teen years. Her bracelet informs medical workers about her heart condition. (Photo: Deanne Fitzmaurice)


Isabella’s care map

Isabella Villafana care map

Isabella’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.