Caring for a Seriously or Chronically Ill Child

• Getting Support When Your Child Has Special Health Care Needs

  You might have more on your plate than most parents, but it doesn’t mean you have to do it all alone. Here’s how to ask for help and avoid caregiver burnout.

• Getting Teens Involved in Their Health Care

  Involving teens in their health care can help prepare them for managing it on their own as adults.

• If Your Baby Has a Birth Defect

  If your child has a birth defect, you don’t have to go it alone – many people and resources are available to help you.

• Is My Child Too Sick to Go to School?

  It can be hard to know if kids are well enough to go to school or childcare. Here are some guidelines.

• Legius Syndrome

  Legius syndrome is a rare genetic condition. Kids who have it have multiple café-au-lait spots on their skin and might be slower to walk, talk, and reach other milestones than most kids.

• Managing Home Health Care

  When kids need intensive health care after they’re discharged from the hospital, family and caregivers should learn about the devices, equipment, and support they’ll need.

• Neurocutaneous Syndromes

  Neurocutaneous syndromes are genetic disorders that lead to tumor growth in various parts of the body. Learn how to maximize the quality of life for children with these diseases.

• Neurofibromatosis Type 1

  Neurofibromatosis type 1 (NF1) is a genetic condition that causes benign tumors in and under the skin, often with bone, hormone, and other problems. Learn more about how it’s diagnosed and treated.

• Occupational Therapy

  Occupational therapy can help improve kids’ cognitive, physical, and motor skills and build their self-esteem and sense of accomplishment.

• Palliative Care

  Palliative care provides physical, emotional, and spiritual support to sick children and their families.