Courageous Parents Network

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.