What Forms of Support Exist for Children Facing End of Life? An Interview with Angie Carmignani

Today, SevenPonds speaks with Angie Carmignani, Executive Director of The Taylor Family Foundation, an organization striving to enhance the quality of life for children facing disabilities and life-threatening illnesses as well as providing support for those at the end of their lives, in Livermore, California. The Foundation is well-known for its Camp Arroyo program, a camp where children with special needs are celebrated for their individuality. In this interview, she discusses the history of the Foundation, types of support available to families with children facing the end of their lives, insights into whether age has an effect on how situations are handled and coping mechanisms.

Credit: Angie Carmignani

Zoë: How have the Taylor Family Foundation’s programs evolved over time?

 Angie: Our first decade we spent on just providing wellness and financial support to children living with HIV and AIDS.  We knew there were 9,000 children living with HIV and AIDS in nine Bay Area counties. By 2000, only 300 children were living with HIV and AIDS in the Bay Area. Most had passed away, with very few still living at an older age, and a small minority was adopted out of state. The evolution really came in around 1998 and 1999. We built a camp exclusively for children with HIV and AIDS, a cleaner place. We believed we really wanted to focus on pediatric AIDS. However, in 2000 the evolution shifted to not enough children with HIV and AIDS [for the camp]. Our founders, Barry and Elaine Taylor, said, “We can’t let this facility go unused. We need to fill this camp.” It became our goal to find the children with the illnesses not recognized on a national level, which we affectionately call “orphan illnesses” here. We cold-called all hospitals and told them our goals. We talked to doctors, nurses—pretty much anyone who would talk to us. We have grown from the initial 11 sessions in 2000 to 32 sessions this year.

Credit: Angie Carmignani

Zoë: What forms of support do you provide for children and their families facing serious illnesses and death?

Angie: It depends. Every individual family has a different need. For end of life, it could be helping them to pay for a funeral and the mortuary, providing equipment to help the family prepare the home so the child can die there, or providing gas cards to help each parent afford to drive long distances back and forth to be near their child.

We have grown from the initial 11 sessions in 2000 to 32 sessions this year.

Zoë: What do you do to help hospitalized children celebrate the holidays?

Angie: We provide support in a few different ways. One is that we fund holiday parties that the hospitals put on for the children. Another form is that we’ll do a gift card with an ornament that we make here at the Foundation and have Santa deliver it to a child. A third is we give goodie bags full of holiday gifts for children of all ages. The gift depends on the age and needs of the child. It could be Legos or craft kits, iPads or tablets, something nice so they can pass the time when they’re in there for so long.

Zoë: Does the age of the child have a bearing on how they cope?

Credit: Angie Carmignani

Angie: No, not in my experience. The age of the child does not have a widely different impact. It’s not the age where we see a wide difference. It’s the family unit’s core. How the parents deal with it affects the child more than age does. Is one parent or are both parents present with the child? Is one parent shut down? The kids are so medically monitored. Of course, it’s different between a two or four year-old than a 15 year-old. Sometimes it’s inevitable for one parent to not be there. The mom might not be working and Dad is working two jobs or vice versa. Not seeing their parents every day makes it hard on the kids. That has a large effect on them.

Zoë: Does the age of a child affect how you handle end-of-life situations with them?

Angie: We don’t handle that situation. We’re usually working with another family member or family friend to coordinate all of that, so to speak.

 The age of the child does not have a widely different impact. It’s not the age where we see a wide difference. It’s the family unit’s core. How the parents deal with it affects the child more than age does.

Zoë: Would you be kind enough to share some tips for parents interested in your programs for their children?

Angie: Sure. That’s part of our issue. We’re all word of mouth. Contact us. If we can’t help or we don’t have a program suited for them, we will find one for them or connect them with another family dealing with the same disability or serious illness. Call us and email us.

Zoë: Thanks so much for speaking with us!

Angie: Yeah, absolutely.

More SevenPonds interviews:

• Dealing with Death During the Holidays: an Interview with Brad Leary
• What is NODA? An Interview with Carleen McCornack
• How to Cope with a Terminal Illness? An Interview with Michael Engelberg