Dealing with Death

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Organizations often struggle with how to provide for families who have lost a loved one to the condition and still offer hope to the families who are struggling to hang on to hope. Though not as dramatic, the same tension is felt by many organizations when the newly diagnosed hope for a mild course of the condition and the veterans need support because of the severe changes in their lives. These losses require a delicate touch. Advocacy organizations are often able to draw on their members' experiences and provide both kinds of support and the continuum in between.

One organization describes its perspective:

Jim Moore

"Death of a member or member’s child doesn’t affect AXYS in precisely the same way as it does many other organizations. Those we serve have a life expectancy just a few years shorter than normal. But there are comorbid conditions – cancers and others – that arise more often, and when 'one of ours' is taken early, especially by one of these comorbid conditions, we memorialize the loss and celebrate the person’s life. Since most of those who die of illness are adults, they often lead the way by sharing their experiences as they unfold.

These losses are difficult, because they not only remind us of the additional health risks associated with X and Y chromosome variations, but because they also remind us of the additional challenges those we serve those we serve may endure throughout life. Some losses are particularly tragic because many are bullied throughout life, some to the point of being assaulted and murdered. Those cases are especially difficult to accept. But each situation is an opportunity to build community and educate. The vast majority of loved ones of the deceased will take the lead in memorializing the person as a way to raise awareness."

Whether your organization supports a genetic condition that leads to early death or does not have any impact on life expectancy, you may wish to consider two aspects of preparing for the death of a member: acknowledgment of the passage and support opportunities for family members. Although few of us are enthusiastic about creating procedures for this type of event, having a procedure or policy in place can give a comforting sense of knowing, at least, what to do next.

Acknowledgment of death can take two primary forms: immediate responses on the part of the organization (such as a card or gift to the family) and/or memorial activity in a public forum, perhaps at a regularly held meeting or as an announcement in your organization's newsletter.

Support for grieving families can take a variety of forms, too, from a simple personal expression of condolences from a group member to substantial commitment of time and resources to provide active support to family members. Where your organization falls in this continuum will likely be influenced by the severity of the condition and may be influenced by the cause of death. We don't mean to suggest that a car accident is less deserving of support for survivors than a death related directly to the condition your organization supports, but it's reasonable for your organization to make decisions about how much effort it is able, fairly, to offer in this area.

Here is an example of what one organization does:

Jana Monaco
Organic Acidemia Association (OAA)

"With OAA, the death of one of our affected kids or adults is put out on our list serve, Facebook page, and website. We also have a memorial page on the website with photos of the deceased and a little caption about the person. At our conferences every two years, we have a photo montage to music that is shown at the end to remember all those who have passed away. It helps keep their memories alive and is a beautiful tribute."

Another organization offers related ideas:

Marie Malloy
CdLS Foundation

"We try to connect a family who has just lost a child with CdLS to a family who has been through it, if they want. Several families also participate in a closed Facebook group. Recently, we published a book written by our parents, grandparents, and siblings about their personal experiences dealing with death and grief."

Valuable resources on this topic include Partnership for Families and Padres con Padres.

Supporting our Members During the Loss of a Loved One

Brenda Conger, Director
CFC Family Network, Inc

"We have had a few deaths in our group, and I usually send out a card from the organization as well as a special book that helped me when my own younger brother died. We find that the families are very appreciative to have an article on their child along with a photo in the next newsletter. The parents have all been involved with writing the tribute on their child. We always include the deceased families in our Parent Directory, and at our very first International Conference two of the families did attend!

The one mom in our organization who has lost her only child to complications from CFC syndrome has worked through her grieving process by selling Silver Pins in honor of all children with disabilities. She has made up a nice business card that goes with the pin and explains how the money will go to assist children born with CFC syndrome. This mom has also volunteered to become editor of our newsletter. The other three families that have had deaths remain in touch, but are not so involved with the organization or Family mailing list.

I had the conference dedicated to those that have passed over to the other side and had a tribute page with their photos in our conference program."

Another organization has a similar approach:

Jackie Clark
Share and Care Cockayne Syndrome Network

“In my group, Share and Care Cockayne Syndrome Network, we have a few private groups (one for parents of CS kids only for medical discussions, and one for anyone grieving from the loss of a child with CS) as well as a public "FanPage" on Facebook. When a child passes away, the parents are usually aware that the child has been sick since they typically will post information in the private FB group.

-- We post the sad news with a picture of the child on our FanPage, and then families usually share it on their pages.

-- We add the newly bereaved parents to the "Good Grief Page"

-- Record a balloon release in memory of the child or several children who recently passed away, and we put it on YouTube in addition to sharing it on the FanPage.

-- Post happy birthday messages of all of the kids, even the ones who've passed away (and we include how old they would have been)

-- Post messages to remember them on their "angelversaries".

We also try to post a picture of a CS child daily on our FanPage to celebrate a CS child or children; they can be living with CS or passed away.

I found the Compassionate Friends meetings in my area to be very helpful; thus, I try to ask them to send a rep out to conferences, and/or ask for someone from Children's Hospital to facilitate a memorial for our group, which includes a live butterfly release. Last year we had a t-shirt made with a butterfly design using all of the names of kids who had passed away from CS.”

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