A mother of a 22-month old with leukodystrophy talks about how their pediatrician is helping them consider their goals of care for their child, and helping them think about which interventions they want for their child. “The providers respect our choices but are helping us not treat her just to treat her. Our goal is comfort care.”

A mother of a 22-month old with leukodystrophy talks about the tension between wanting her child to stay alive but also recognizing that her child is uncomfortable and not at peace. “I will need to let her go, and that’s OK.”

Parents of a 22-month old with leukodsytrophy and 6 other children talk about how You Just Do It. If you actually step back and reflect on what you’re doing, it is overwhelming. Their daughter has taught them endurance and the importance of focusing on the present.

Parents of a 22-month old with leukodystrophy and 6 other children talk about living with this child for whom they do not know how long she has. They talk about how they know it is likely their daughter will die but because they don’t know exactly, they focus on Today. The dad observes that their daughter’s STORY will live forever.

A palliative care doctor talks about the importance of providers’ recognizing that parents have care goals for their child and that it is their job to help parents identify and vocalize them; a father of a child with leukodystrophy encourages parents to SAY what they want for their child. They will be heard.

A mother of a 22-month old with leukodystrophy talk about how not all doctors know how to deal with these special children and that she had to change hospitals to find the right team for her child.

The mother of a 22-month old with leukodystrophy talks about the impact of her daughter’s illness and prognosis has had on her relationship with her faith and the notion of suffering and walking the walk.

A father of a 22-month with leukodystrophy shares the impact her illness and prognosis has had on his relationship with Church: he has distanced himself from the teaching but draws support from the faith community.

Parents of a 22-month old with leukodystrophy and 6 other children share how they’ve learned to communicate about all the stressors, and how they have benefited immensely from marriage therapy. “If you want your marriage, you need to fight for it …. and get help.”

Parents of a 22-month old with leukodystrophy and 6 other children talk about how understanding their children are and how they pitch in and help make it all possible, and how specific they are with their children about what they need from them.