Courageous Parents Network

Arika Patneaude is a licensed clinical social worker who is the director of bioethics and pediatric palliative care at Seattle Children's Hospital. She is also a passionate advocate for health equity and awakening to unconscious bias in medicine and the impact it has on underresourced and historically excluded populations. I experienced her passion as a Call to Action in multiple ways.

Ashley and Theron are parents of three children, including Viggo Rick, who died at 6 months of complications related to Trisomy 5p. They offer so much wisdom to other caregivers and suggestions to clinicians about what helps (and what hinders) parents of newborns born with very rare, life-limiting conditions.

Mom Amy and her daughter Lauren's palliative care doctor, Erin, talk about Erin's care of 7-year old Lauren: how she saw her as the full child that she was -- not just a cancer diagnosis -- and how she managed Lauren's 'total pain' during her 3 years of treatment for cancer, including addressing Lauren's fear of dying.

CPN's Blyth Lord talks with child and adolescent psychiatrist Elena Lister about the importance, value and life-long positive impact of talking with children honestly about illness and death. "What is mentionable is manageable." This far ranging conversation focuses especially on supporting siblings of children who are sick or who have died from illness.

Jerris advocated for his daughter Faith from her diagnosis at age 4 with osteosarcoma, through 23 major surgeries, side effects, setbacks, and complications, until her death shortly after her 18th birthday. Towards the end, they met Dr. Bob Macauley who helped get Faith home. Jerris emphasizes the need to create a space for dads as advocates and emotional caregivers.

CPN's interview with Pediatric Palliative Care NP's Luke and Sean, Valley Children's Hospital, Madera, CA

Shared Struggles: CPN's Blyth Lord talks with contributing editors parent Ann Schrooten and Dr. Barry Markovitz about their book and the collective wisdom from parents and physicians about the sacred, shared enterprise of caring for children living with serious illness and medical complexity.

CPN’s Blyth Lord talks with Michelle Moon, a bereaved mom and adult neurologist, about her decision to pursue fellowship in Hospice and Palliative Medicine: what about her experience with her daughter Julianna led to this career pivot and how is it feeling for her as she nears the end of her fellowship and considers her future as a doctor while always honoring Julianna’s life and legacy.

Dr. Wynne Morrison, director of pediatric palliative care at Children’s Hospital of Philadelphia, talks with Blyth Lord about what drove the creation of Courageous Parents Network.

CPN's conversation with mom and writer Faith Wilcox about her experience parenting her teenage daughters Elizabeth and Olivia, following Elizabeth’s diagnosis with Osteosarcoma. Elizabeth died at age 14. Faith talks about how she and Oliva grieved together and separately in the years that followed.

An audio recording of CPN's In the Zoom Room event on Tending the Adult Relationship with families and psychologist Nancy Frumer-Styron.

CPN’s Blyth Lord talks with Carla, the mother of Talia who had infantile Tay-Sachs and died shortly before her second birthday, and Robin, Carla’s mother, Talia's grandmother. Theirs is a particularly close relationship

In this episode, CPN's Jennifer Siedman talks with her son Noah about the days leading up to Noah's brother, Ben's passing. They explore grief, the pressures siblings feel and creating a new family dynamic.

In this episode, Amy and Ray Miller , parents to Dan, who had Hunter Syndrome and Hailey join CPN’s Jennifer Siedman to talk about surrounding their son Dan with love, family and friends during his final days, their identity as parents and being happy again.

CPN's interview with Dr. Kate Davidoff on her journey to becoming an attending pediatric palliative care doctor: what drew her into medicine and then working with seriously ill children and their families.

In this episode, CPN’s Jennifer Siedman talks with Chelsey Klenke Robertson about the challenges and gifts of loving Craig, her brother who had Hunter’s Syndrome(MPS II). Her mother Kris joins them to talk about Craig’s final days, the grieving process and how Craig’s legacy has impacted their careers.

In this episode, CPN’s Jennifer Siedman talks with Grey Chapin, founder of the BLAIR Connection, a digital resource to support siblings as they experience the challenges of having a terminally ill brother or sister. Jennifer is the mother to three – Noah and Isabelle, and their brother Ben, who died in 2014 from Sanfilippo Syndrome. Grey is the younger sister of Blair, who also had Sanfilippo Syndrome and died in 2017.

Patient disease advocacy organizations are united in the common goal of improving the lives of those living with the rare diseases they represent. For some in the community, the science has advanced and treatments are available. For others, a treatment is still off on the horizon. In this episode, CPN’s Jennifer Siedman talks with Leslie Urdanta, Family Support Coordinator for the National MPS Society, a community for individuals and families living with MPS and ML about how the Society supports its families through the relatively new landscape of clinical trials; managing expectations, tempering frustrations, lifting up its members during times of disappointment, celebrating with them when advancements happen and always keeping the community united.

CPN's Jennifer Siedman talks with Diana Pangonis, Director of Family Services for NTSAD. For the very first time since its beginning over 60 years ago, the NTSAD community has or is anticipating early stage clinical trials for its diseases, Tay-Sachs, GM-1, Sandhoff, and Canavan. It's a new landscape for the NTSAD families. Jennifer talks with Dianoa about what supporting families through the clinical trial experience looks like.

Today the landscape for families of children diagnosed with rare and fatal conditions looks very different than it did even a decade ago. New therapies and treatments are here, including gene therapy. But what do the innovations mean for parents who may be faced with the opportunity to enroll their child in an early stage clinical trial which is, at its core, an experiment? In this episode, CPN’s Blyth Lord, whose daughter did not live to see the new possibilities, talks with Dawn Mariano, a mom who will be facing such a decision for her baby daughter.

Rebecca Kuzarski, mom to Ethan, Hannah, and Sophia, sat down recently to talk with her friends about the death of her daughter Sophia 5 years ago. Sophia was diagnosed with Leukemia at the age of 3 and unexpectedly died 7 months into her treatment. Listen as this intimate group of friends, these 5 years later, reflects upon how they came together as a community to support the Kuczarskis, the children and each other from diagnosis through the unimaginable.

Emma Artinian was diagnosed with Sand-hoff disease when she was 12 months old and she died when she was 3 and a half. Here her mother Becca and her grandmother Christine, Becca's mother, talk about what it was like to love and care for and lose Emma, together. Emma's little sister Ava was born after Emma passed away and has brought new light into their life.

Cari is the mother of Dylan and his older sister Jessie. Jessie died in December 2015, at the age of 13, from Sanfillipo Syndrome, a form of MPS. Cari and her husband Matt say that Jessie was the light of their family, always happy, and with a huge smile for everyone, especially her brother who she absolutely adored.

Sarah is the mother of Emerson. After 7 sleep-deprived but blissful months, Sarah and her husband Steve learned that Emerson had Gaucher Type 2. Gaucher Type 2 is always fatal in early childhood. Sarah shares here the vital role that Courageous Parents Network AND pediatric palliative care played in the months that followed the diagnosis and then Emerson’s death shortly after her first birthday, in June 2016. This recording is taken from a talk that Sarah gave in January 2017 at Pediatric Grand Rounds at the University of Vermont Children’s Hospital, where Emerson was loved and cared for and where she died.

Ben is 15 years old and lives with his mother, father and two younger sisters, McKenna and Joelle. Ben was born with Cerebral Palsy. He loves school, the Red Sox, and spending time with his sisters. Makenna and Joelle include Ben in everything they do and have become compassionate advocates for children with disabilities.

Wendy is currently twelve years old. At the age of three and a half, she contracted an E-coli infection that resulted in a syndrome called Hemolytic Uremic Syndrome which causes kidney, pancreatic and heart failure. Wendy has had many surgeries including a kidney transplant, and she continues to struggle medically.

Jean and Tim share their family memories and the cancer diagnosis of their only daughter Megan. Megan chose to follow the path of hope and gratitude as she fought against this disease. Her parents supported her wishes and continue to work to live a life that Megan would be proud of. Megan left this physical world August 9th, 2014, two days after her 14th birthday.

Pat is a mother of four and grandmother of ten. Jake is her fifth grandchild, and her daughter is Jake’s mother. As a parent and grandparent who lives close to Jake and his family, she has seen and felt firsthand the challenges, joy and pain of watching her own child struggle with raising a child with complex medical needs, who requires full time, life long care.

Emma is a nursing student at Boston University, who works part time as a personal care assistant for Jake. Emma has cared for Jake for almost two years, since she was in high school, and is one of Jake’s favorite companions. Emma and Jake are close in age, yet worlds apart in their health and ability. With compassion and great instinct, Emma engages and talks to Jake as if he were simply a friend, and over time, they have formed an amazing, close bond.

Ed is a father of four and grandfather of ten. Jake is his fifth grandchild, and his daughter is Jake’s mother. Jake and Ed have shared a special connection since the time that Jake was born. Jake has few words, but one of his favorites is “Papa.” Jake and Papa have great understanding and love for one another, and any time spent with his Papa is happy and thrilling for Jake.

Charlotte is a student at Merrimack college, an avid athlete, and an aspiring teacher. Jake and Charlotte are cousins, and are only six months apart in age. Charlotte and Jake have grown up together and from a very young age, Charlotte and Jake have shared a close and loving bond. Inspired largely by her experience with Jake, Charlotte is interesting in working as a teacher and has focused her time and talents on working with children with special needs.

Amanda and Joel are part of a close knit family that grew only closer after their second daughter Sadie was diagnosed with the rare disease CDKL5. Pushing past the fears and learning to live for today, the Laflammes recently welcomed another baby girl, Savahnna, who is healthy and happy.

Cheerful, laughing Abby was 11 years old when doctors discovered a large cancerous tumor in her shoulder. After a tough battle, Abby died at home with hospice support at age 14. Her loving parents, Amy and Scott, and her younger sister, will forever hold her in their hearts.

Aislin and EmilyRose have a very special bond. Aislin was diagnosed with cancer as a young child and has lived with the complicated effects of treatment for her entire 17 years. Her best friend, EmilyRose, helps her through the hard times while focusing on their future together. Sadly, Aislin died from complications from her treatment just a few months after this recording.

Kerri Padgett began working with families of seriously ill children, in pediatric palliative care, after her own two year old son, Kai, died of an inoperable brain tumor. Three years later, her 31 year old brother, Pat, also died of an unrelated cancer.