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

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 Martinez

Madre de Kendall “Kenny” (2 1/2 años)

Kenny tiene dysplasia broncopulmonar, broncomalasia, y traquemalasia

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.

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

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

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

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

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

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

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

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

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

Parents of William, who died at age 8 from GM-1, and siblings Kyla and John

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 ...

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

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

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

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

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.

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.

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

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

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.

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

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 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. ...

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

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

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

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, parents of a young boy who died from SMA, share their experience.

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

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

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