Resource Guide

An estimated 456,000 American children live with epilepsy. When epilepsy becomes medically complex, it can impact nearly every aspect of a child’s health and require continued around the clock level of care.

Epidermolysis Bullosa (EB) is a condition that’s often seen at birth or shortly after. It’s a group of rare diseases that cause skin to blister easily. Because a baby’s skin is extremely fragile, everyday care — such as diaper changes or soft touches — can lead to blisters and open wounds. Kids with EB are often called…

The decision for a pregnancy after child loss is personal and 100% between you, your partner, and your physicians.  For some parents, the desire to try again feels immediate. Others may feel afraid, emotionally overwhelmed, or uncertain about whether they want another pregnancy at all. In some cases, infertility or recurrent pregnancy loss may already…

Navigating life after loss of a child can feel impossible. This compassionate guide offers gentle ways grieving parents can begin reintegrating into daily life while honoring their child and their grief.

One of the most difficult parts of receiving a life-altering diagnosis for your child is often trying to explain that diagnosis to them when they just want to laugh, play, and just be a kid. It’s important to start with honesty, not perfection.

Learn what rare genetic diseases in children mean for families, including Lissencephaly, Sanfilippo & Leigh Syndrome, plus support resources for caregivers.

Discover what to look for when it comes to premature birth signs and symptoms and what to expect with early deliveries.

Learn more about what stillbirth is, why stillbirth still occurs, and stillbirth risks to help educate yourself and others about this difficult-to-talk-about topic. 

Acute means “fast-growing,” and in the case of Acute Myeloid Leukemia (AML), the body makes too many immature blood cells that don’t turn into normal white blood cells. Because AML is a fast-growing cancer, the signs and symptoms are typically caught early.

Learn more about what exactly BPD means for your baby and the treatment routes your baby’s physicians may recommend over the next several weeks.