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Video Library

Hear from fellow parents, as well as medical providers, in videos organized by themes specific to caring for seriously ill children and the entire family.

Prefer to read? 1) Subtitles are available for all CPN videos. Just click the CC (Closed Caption) icon at the bottom of the video screen. If you want to adjust your settings, click the gear icon. 2) Family and provider interviews also have transcripts available.

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Jacob, Erin, Leah, Michael

Jacob, Erin, Leah, Michael

2 aunts and 2 uncles of Havi, who died at age 2 from infantile Tay-Sachs.

Marilia

Marilia

Madre de Daniel (5 años) y Diego. Diego nació con una afección cardíaca congénita y murió a los 7 años.
Swati and Joseph

Swati and Joseph

Swati and Joseph, parents to Caleb (8) and Canaan. Canaan died at 20 months from Noonan Syndrome.
Lindsay, Bear and Dani (aunt)

Lindsay, Bear and Dani (aunt)

Parents of Quinlan, who died at the age of 2 of a rare genetic illness BRAT1, and his younger brother August.
Shawna and Mike

Shawna and Mike

Shawna and Mike,parents of Keenan, Kyle, Kashton and Karston. Keenan was born with Microcephaly Capillary Syndrome. Keenan died just before his third birthday. His siblings were born after.
Laura and Dave

Laura and Dave

Parents of Hadley (3) and Alden (1). Alden has Polymicrogyria.
Lynette

Lynette

Mother of Anderson “Andy” and Zach (and Jamie). Lynette is pregnant with Jamie at the time of this interview. Andy was born with Marfan Syndrome and died at age 3.
Jesse M

Jesse M

Madre de Kendall "Kenny" (2 1/2 años) Kenny tiene dysplasia broncopulmonar, broncomalasia, y traquemalasia
Janna

Janna

Janna Koretz, Psy.D Mother of Henley, who has had a heart transplant. Henley contracted enterovirus myocarditis which in rare instances can cause serious cardiac side effects.
Natalie

Natalie

Mother of Emma (23), Avery (21) and Lyla (18). Emma has been medically complex from birth.
Sandy C

Sandy C

Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and died 15 years ago at the age of 5 – only 9 months after his diagnosis, most of which was spent in the ICU. 
Carla (mom) and Robin (grandmother)

Carla (mom) and Robin (grandmother)

Carla, mother of Nathan, Audrey, and Talia (died at 23 months from infantile Tay-Sachs) and her mother Robin in conversation about their mother-daughter relationship in the face of Talia's diagnosis and illness.
Kate M

Kate M

Kate, mother of Joseph, Jack and Grace. The boys have familial cardiomyopathy. Joseph died at age 6; Jack received a heart transplant at age 4.
Dawn

Dawn

Dawn, mother of Vayle (age 16 months). Vayle has Canavan Disease.
Megan

Megan

Megan, Executive Director Sanfilippo Children’s Foundation. Mother to Isla (10) and Jude (8), Sanfilippo Syndrome
Jenn M

Jenn M

Mother to Austin(20), Max(17), James(11) and Norah(8). Austin & Max have Duchenne Muscular Dystrophy & James has Primary Immune Deficiency
Michelle M

Michelle M

Michelle, mother of Alex (age 7) and Julianna. Julianna had a severe form of Charcot-Marie-Tooth disease and died at age 5.
Hannah and Eric

Hannah and Eric

Hannah and Eric Schermerhorn, parents of Sage and older brother Gabriel. Sage was born with Arteriovenous Malformation (AVM) and died at age 3 months.
Jacqui

Jacqui

Jacqui, Mother of Tommy (2 ½) and Claire (1). Claire has aspiration and sleep apnea.
June

June

June MSW, LICSW, ACHP-SW, and mother of Alissa (24) and Katie (28). Katie is medically complex and likely has Rett Syndrome.
Michelle and Joe

Michelle and Joe

Michelle and Joe, parents of Logan (11) and Matthew (8). Matthew has Batten Disease/CLN2 and was one of the first children in US to receive Enzyme Replacement Therapy beginning at age 4.
Brenda

Brenda

Brenda is the mother of Sam, Simon (13) and Solomon (4). Her husband is Josh. Sam suffered a stroke in-utero and was medically complex from birth. He died in September 2018 at age 15.
Mona

Mona

Mona is the single-mother of Owen, age 5, who has Juvenile Tay-Sachs.
Grandmother Melissa

Grandmother Melissa

Melissa, mother of Sarah and grandmother of Emerson (Gaucher Type 2)
Erin

Erin

Emily and Darren

Emily and Darren

Parents of Parker (15) Christopher (4) and Jacob (2). Christopher has Hurler Syndrome (MPS Type 1) and has had a stem cell transplant.
Oralea and Rod

Oralea and Rod

Parents of William, who died at age 8 from GM-1, and siblings Kyla and John
Joanne (mom) and Lexi (sister)

Joanne (mom) and Lexi (sister)

The decision to place Barry in a residential facility was hard, especially on sister Lexi. Mom, Joanne speaks with Barry's pediatric palliative care doctor about the factors that contributed to the decision and the emotions attached to deciding it was ...
General Family

General Family

A single conversation with a family member, with no accompanying additional videos.
Barb and John

Barb and John

Parents of Jake (18 at the time of this interview) who has Dravet syndrome and Secondary Mitochondrial Dysfunction, and older son Ryan.
LJ and Catherine

LJ and Catherine

Parents of Rachel, who has leukodystrophy, age 22-months, and siblings Alex, Caitlyn, Joshua, Abigail, Simeon, and Michael
Joy & Bruce

Joy & Bruce

Parents of Corinne (Cora), who has Trisomy 18 and was 3 months at the time of this interview. Cora is now 3 years old.
Kate

Kate

Mother of Brooke and older son Jake. Brooke had infantile Tay-Sachs and at the time of this interview was age 3. She has since passed away.
Jenn & Joe

Jenn & Joe

Parents of Mallory, who has Juvenile Tay-Sachs and siblings Matthew and Melanie. At the time of this interview, Mallory was 6. She is now 9 years old.
Kerri

Kerri

Mother of Kai, who died from an inoperable brain tumor at age 2
Haydee and Orlando

Haydee and Orlando

Parents of Kristie, who died at age 16 from leukemia, and siblings Kimberly and Danny.
Lars and Elizabeth

Lars and Elizabeth

Parents of Adelaide, age 3 with ‘shrinking white matter’ disease, and Charlotte (8) and Levi (6). At the time of this interview, Adelaide was age 3. She is now 5 years old.
Chad and Kristina

Chad and Kristina

Parents of Talon, who had a peroxisomal disorder and died shortly before his 2nd birthday, and older brothers Benjamin and Nicholas
Sherri

Sherri

Mother of Rachel. Rachel has Canavan disease and at the time of this interview was 16 and Jessica was 17. They are now 19 and 20 respectively.
Blyth and Charlie, Tim and Alison

Blyth and Charlie, Tim and Alison

Blyth and Charlie are parents of Cameron who died at age 2 from Tay-Sachs disease, and sisters Taylor and Eliza. Tim and Alison are parents of Hayden who died at age 2 from Tay-Sachs disease, and sisters Annie and Mary. ...
Paula

Paula

Mother of Lydia who died at age 9 from cancer and older son Luke (12)
Jennifer and Stuart

Jennifer and Stuart

Jennifer and Stuart Siedman, parents of Ben, who had Sanfilippo Syndrome and died at age 17, and siblings Noah and Isabelle.
Nicky

Nicky

Nicky, mother of Janessa (age), Isaiah (13) and Avery (9). Isaiah and Avery have mitochondrial disease.
Greg and Heidi

Greg and Heidi

Parents of Abby, age 5, and Tomas, age 4. Abby has Leigh's Disease, a rare and life-limiting form of mitochondrial disease. Abby is receiving an experimental therapy.
Janet and Brian

Janet and Brian

Janet and Brian, parents of a young boy who died from SMA, share their experience.
Jenessa

Jenessa

Jenessa, mother of Zach (15), Alex (12) and Zoe (9). Alex has SMA Type 1.
Ben and Allison

Ben and Allison

Ben and Allison, parents of Julia (7) and Wilbur (2) and Beckett and Clementine who died at age 3 and 2 respectively from a rare metabolic acidosis disorder.
Cari

Cari

Cari, mother of Dylan (age 11) and Jessie. Jessie had Sanfilippo Syndrome and died at age 13.
Sarah and Steve

Sarah and Steve

Sarah and Steve, parents of Emerson, who died at age 16 months from Gaucher Type 2.