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Issue 16-113 — November 12, 2016
Starshine Galaxy Foundation is a nonprofit organization whose mission is to help sustain the memories of children who have died. To this end, we support the Tributes to Lost Children Community Page on Facebook as a place to post, share, and comment on activities to honor our departed children and to celebrate their lives. This biweekly Tributes Digest presents highlights from this community page along with other items of interest. Please feel free to forward this on to others you know who might be interested, and direct any comments, questions, or concerns to starmaster@starshinegalaxy.org.

HIGHLIGHTS:
(click on title to link to the original post)

BEAUTY IN THE WORLD –
She Found Every Second of Life Delightful (November 8) – In May 2015, 2-year-old Greta Greene went for a stroll with her grandmother on the Upper West Side of Manhattan. As they rested on a bench, a piece of building broke free eight stories above them. It struck Greta in the head; she died after undergoing hours of emergency brain surgery. After his wife gave birth to a son a few months ago, Jayson Greene, Greta’s dad, wrote a piece for the New York Times called ‘Children Don’t Always Live.’ Although grief is at the heart of Jayson’s essay, his words are also a tribute to Greta, who will forever be his daughter. “… Life is good: Greta loved it,” he writes. “She found every second of it delightful, and at its best when appreciated with others. I think of her hand touching my cheek and I muster up every drop of bravery I can: ‘It is a beautiful world,’ I tell [my son], willing myself to believe it. We are here to share it.”
FANCONI ANEMIA RESEARCH –
A Lasting Legacy for the Frohnmayer Sisters (November 10) – The Fanconi Anemia Research Fund is a ray of hope for those who have been diagnosed with Fanconi Anemia (FA). FA is a rare recessive genetic disorder that’s mostly considered to be a blood disease, but it can impact all body systems. Having FA drastically increases the risk of developing a variety of cancers at an early age – many FA patients develop acute myeloid leukemia during childhood. Lynn and Dave Frohnmayer founded the Fanconi Anemia Research Fund in 1989 to be able to better study the devastating disease, because three of their five children had it – in 1991, 12-year-old Katie died from FA-related complications; in 1997, 24-year-old Kirsten died of graft-versus-host disease of the lungs following a bone marrow transplant for FA; and their youngest child, Amy, died just last month from complications from leukemia – she was 29. The Frohnmayers’ efforts have become a powerful, living legacy for their daughters, one that continues to offer help and hope to the families that struggle with such an overwhelming diagnosis.

 
DON’T LOSE YOUR WAY –
Remember Darby’s Story… Never Lose Your Way (November 9) – Darby Hoetker was 28 years old when he died of an accidental overdose in 1998. It was the moment that his dad, Frank Hoetker, had been dreading for more than half of his son’s life – Darby’s struggle with addiction began when he was just 13 years old. To cope with his grief and make sense of his loss, Frank left a successful career and dedicated his life to a new mission – he wanted “to inspire youth to make better choices about substance abuse.” He began speaking to at-risk youth in treatment centers, high schools, middle schools, and juvenile detention facilities. He wants young people struggling with addiction to know that Darby was like each and every one of them, but that they needn’t meet the same fate. After he shares his son’s story, Frank gives each attendee a compass key ring imprinted with the words: “Remember Darby’s Story … Never lose your way.”
SIDS AWARENESS –
We Know That His Short Life is Making a Big Difference (November 11) – The Charlie’s Kids Foundation began on April 6, 2011 – would have been Charlie’s first birthday. Charlie, the firstborn child of Sam and Maura Hanke, was born on that day in 2010. He was healthy and much anticipated by his parents, who say that he became “the reason the sun rose and set each day.” But when Charlie was just three weeks old, the Hankes’ world turned upside down when Sam fell asleep with Charlie on the couch. Sam woke up, Charlie didn’t. He had died from SIDS and an unsafe sleep environment. “There is nothing that can take our pain away,” Maura says, “but trying to prevent other families from living this same nightmare offers some sense of purpose as we move forward in our grief.” Sam and Maura started the Charlie’s Kids Foundation so they could raise awareness of SIDS, educate families, provide resources for new parents and promote dialogue about safe sleep practices.
 
PEDESTRIAN SAFETY –
His Death Will Mean That Many Others Will Live (November 3) – On January 10, 2014, Cooper Stock walked hand-in-hand with his dad, Dr. Richard Stock, toward their home on the Upper West Side of Manhattan. They were almost home when a taxi cab slammed into them in a crosswalk. Cooper’s dad lived, but Cooper was killed. Cooper Stock’s Way – the organization founded by Cooper’s parents after his death – is driven by their overwhelming desire to keep his spirit alive. It achieves that in part by working to make NYC streets safer for pedestrians. Cooper’s Law, which was passed in May 2014, makes it possible for taxi drivers who kill or seriously injure pedestrians to have their licenses revoked permanently. “Through education and action,” says Cooper’s mom, Dana, “I know changes can be made in honor of Cooper. His death will mean that many others will live.”
EARLY HOLIDAY LIGHTS FOR DAX –
The Dax Foundation: Cherish Every Moment (November 1) – When Dax Locke was 15 months old, he was diagnosed with AML M7 leukemia. Although he went through several rounds of chemotherapy and received stem cells, the cancer didn’t go away. In October 2009, with the doctors’ predicting that Dax probably wouldn’t make it to the end of the year, his mom, Julie, took him home from the hospital so they could “cherish every moment.” Julie decided to celebrate Christmas early that year – Dax especially loved the Christmas lights on the tree and on the house so, even though Halloween hadn’t yet arrived, Julie put up the Christmas lights. Within days, the neighborhood, and then the entire town, was lit for Dax. His story made it onto CNN and, before long, Christmas lights for Dax had actually gone up all around the world. When he passed away on December 30, 2009, Dax was two and a half years old. In the wake of her loss, Julie started The Dax Foundation, an organization that raises money to support St. Jude Children’s Research Hospital.
 
DEATH FROM RHIZOPUS FUNGUS –
I Feel Like She’s Up There Looking Down on Me (November 2) – Losing a son or daughter is always tragic, but sometimes the circumstances surrounding the loss can be particularly gut-wrenching. Craig and Laurie Amick have such a story – they lost their 27-year-old daughter, Shelby Slagle, not long after she received a new heart. Shelby had been born with a heart defect. Although a childhood surgery helped her live a relatively normal life, her heart started giving her trouble when she reached her mid-20s. In May 2015, Shelby received a donor heart through a successful transplant surgery. During her recuperation at the hospital, however, she contracted an aggressive flesh-eating fungus that progressed rapidly and ultimately took her life. The Amicks keep their daughter present through the many pictures of her that they display in their home. An early riser, Laurie likes to talk to a photo of Shelby over a cup of coffee before she heads off to work. As she sits, she can see the early morning stars out the window. “I feel like she’s up there looking down on me,” Laurie says. “It’s comforting.”
 
WE ARE STILL THEIR PARENTS –
Each Family, In Their Own Voice (November 7) – Just as grief is an individual journey, the ways in which bereaved families remember a child that’s gone too soon are as personal as the life they honor. Some families feel compelled to take action, while other families remember more ‘quietly,’ preferring to keep their tributes private. We’ve already shared stories about how some of the families affected by the Sandy Hook massacre have chosen to honor their children. But as Nelba Márquez-Greene, who lost her daughter Ana in the tragedy, recently wrote: “…just like we were Ana’s parents before her death – we are her parents now. Every parent deserves to remember their loved one the way THEY best see fit.” She encourages people to visit the website ‘My Sandy Hook Family’ to learn more about each of the children who lost their lives, and how their families choose to honor them.
DO YOU HAVE TRIBUTE INFORMATION TO SHARE?
Post it here:
Click to access sign-up form.
The complete netbook version of Tributes to Lost Children – a snapshot of how 147 families have honored their children who have passed away – is publicly available for FREE. Click on the cover image above to navigate to this powerful, heart-warming compilation of tribute stories.
Based on results of the Tributes Survey, three general motivations anchor bereaved families in their tribute activities. See the organizing Tributes Framework that serves as the backbone of the new book Tributes to Lost Children.
Copyright © 2016 Starshine Galaxy Foundation, All rights reserved.


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