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A Brief But Spectacular take on raising a young daughter with a degenerative disease

When Beth Papanastasiou's daughter Bella was born, she was diagnosed with a rare, degenerative genetic disorder and given 18 months to live. That was more than four years ago. Papanastasiou shares her Brief But Spectacular take on the important role palliative care has played in her family's journey as they continue to create meaningful memories for Bella.

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  • Judy Woodruff:

    When Beth Papanastasiou's daughter Bella was born, she was diagnosed with a rare degenerative genetic disorder and given 18 months to live.

    In tonight's emotional Brief But Spectacular, we meet mother and daughter four years into their journey, a journey on which Papanastasiou says palliative care is key to making the most of her daughter Bella's life.

  • Beth Papanastasiou:

    My daughter Bella is 4-and-a-half years old now.

    About seven hours after she was born, she was transferred to Children's National. After about two weeks in the NICU, they informed us that Bella had a very rare genetic disorder called Pontocerebellar hypoplasia, type 6.

    And at that time, only about 12 cases had been reported in the world. And they did let us know that, in most of those cases, the children did not live past infancy. And that was truly the start of our journey and our life with Bella.

    When we first brought her home, every day, I felt like, well, today could be the day that we lose her. The PANDA team at Children's National is the palliative care team that works with families who have children with terminal conditions or other very serious conditions.

    They have been through it, and they have been through it with other families.

    The hardest decisions that we make with the palliative care team are deciding at what point Bella is still fighting to be with us and at what point do we know that Bella is tired?

    Having the support of the PANDA team is crucial to my ability to care for Bella the best way possible and just give us the support and strength that we need to get through living with a child who you know will likely pass before you do.

    It's going to be a little bit different for Bella, what you want for your child. And what I want for her is that she reaches the potential that she is capable of. What I want for Bella is that she knows that she's loved, that she knows that we are here for her and we will fight for her, and that she experiences life in the way that she can.

    She keeps me going, because, if I stop, there's no one for Bella. And I have to get up every day and I have to take care of her, and I have to struggle with her and laugh with her. And if I'm not there to be that person, then I'm letting her down. And she doesn't have enough time to be let down.

    My name is Beth Papanastasiou, and this is my Brief But Spectacular take on my daughter Bella.

  • Judy Woodruff:

    It is so clear that Bella is loved.

    And we thank you, the Papanastasiou family, for sharing Bella's story with us.

    And you can find all of our Brief But Spectacular segments online at PBS.org/NewsHour/Brief.

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