Parents of a child with a life-limiting metabolic disorder, metabolic acidosis, explain their thinking in going ahead with a subsequent pregnancy — their son was doing well, they had a great medical team in place. We can do this!

Featuring the Gauvin family and the unique story of Beckett and Clementine.

Parents in one family with two young children who die from a rare disease describe the two children’s separate deaths and how they differed: one died quickly with no pain medication, one slowly with a lot of medication required. “You think you know what you’re going to do. You make plans but like birth, things don’t always go according to the plan. You have to be flexible.”

The mom of two children who died from a rare metabolic disorder shares: “I didn’t want to regret that we didn’t take photos, so we did. And the photos help remind me now that she was so sick and it was time and ‘we made the right choice’.

Parents of two children with life-limiting illness share how they learned what palliative care REALLY is. At first they misunderstood but gradually they learned how palliative care was about helping them achieve their parental goals, to get home and be comfortable. It is about helping the children and family THRIVE in the Here and Now. Palliative care isn’t about giving up. It’s about making the most of the time we have. Not all children are going to get better. You have to be OK in the in-between.

Parents of two children struggling with a life-limiting disease describe coming to terms with the reality that even with the best medical team, they could not stabilize and save their children, and how exhausting and harrowing the relentless hospital experience was for the entire family, including their older daughter.

The dad describes his shift from confidence and optimism to an awareness that his children were suffering.The goal became about getting home.

A mom talks about how the medical figures are authority figures but there is an equal give and take between parents. Parents are the best source of support. “If you’re comfortable, you make the other people comfortable.”

A dad of two children with a rare metabolic disorder talk about how parents trust and seek comfort, advice and support most from parents of other sick children who are in the same situation.

Parents of two children with a rare metabolic disorder talk about how their big sister become so comfortable in the hospital and with doctors, but what a toll is also took on her young childhood.