Issue 17-125 — April 29, 2017
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

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Ben’s Bells Ring for … Kindness (April 25) – Even though Ben’s Bells are colorful, beautiful, and meaningful, they are more precious than money can buy. Sorry, but you can’t buy them – you’ve got to be lucky enough to find some. The concept of Ben’s Bells was the idea of Jeannette Maré, Ben’s mom, as a way to cope with the sudden and tragic death of her nearly 3-year-old son from the croup in March 2002. She found that the kindness that her family received after Ben died “held us while we felt the sadness and pain that we needed to feel.” She decided to return the favor by creating bells that could be given as random acts of kindness by hanging the handmade bells in public places urging people to “Be Kind.” Since 2002, Ben’s Bells has evolved into a community kindness movement in Tucson (where the Maré family lives) and has spread to other locations, and there are now numerous ways for people to get involved. Jeannette acknowledges that it is a simple concept, but it has become a powerfully integrating initiative. Ben’s Bells have even been used as a symbol of hope and support for communities after tragedies strike, including the Virgina Tech shooting and the Sandy Hook massacre. There’s a lot of great information at and on the “Ben’s Bells Project” page on Facebook. Here’s a wonderful intro from Ben’s mom herself: Intro to Ben's Bells
Do you know of a good book for parents who become caregivers to a child with a chronic disease or life-threatening condition? If so, please email:
We’ll share what we learn next time!
Abi’s Dots: A Beautiful Way to Honor a Beautiful Girl (April 21) – Abi Hone, a 12-year-old girl in New Zealand, was going on vacation with her best friend, Ella Summerfield, and both sets of parents. Abi’s parents, Lucy and Trevor, agreed to have Abi ride with Ella and her parents, Sally and Shane. In the first hour of the trip – in a tragic twist of fate – the Summerfield’s car was T-boned by another vehicle, and only Shane Summerfield, the father, survived. Here’s how Abi’s aunt, Alex Fulton, characterized Abi’s death: “In May 2014, I lost my goddaughter, a father lost his bubble ball of energy, a mother lost a precious daughter, brothers lost their beautiful silly sister, friends, the family lost a caring, warm and funny buddy, a community lost a shining star. Abi Hone was more things to others than she would have ever guessed. She was simply ’our beautiful girl.’” Alex wanted to do something and, as a designer, she decided to do something with color to honor Abi’s zest, energy, and life. Abi’s parents asked Alex to choose the coffin, and Alex said, “I immediately knew it had to be colourful like she was.” She selected a plain wood coffin, and then she painted it and covered it with colored vinyl dots – “Abi’s Dots” as they have come to be called. At the funeral, hundreds of differently colored dots were given to friends and family members, who put them on their cars, clothes and school bags. Abi’s Dots have since made it around the world, and packs of Abi’s Dots are available for sale online (with a portion of the proceeds going to support the Starship ‘Make a wish’ Foundation). Read more about Abi’s Dots on Alex Fulton’s blog.
A Nurturing Place that Gives End-Of-Life Care for Children (and Families) (April 23) – When Dr. Kathy Hull got around to naming her dream-come-true children’s care facility in 2004, she honored her brothers Mark and George, who died at ages 16 and 30 respectively, and called it George Mark Children’s House to honor and celebrate young lives cut short. Located in San Leandro, California, it is the first children's hospice house in the U.S., providing support to families who have children with terminal illnesses and other life-threatening medical conditions. Its mission is to give terminally ill children and their families a calm, nurturing, peaceful place to say goodbye. In addition to around-the-clock skilled pediatric nursing, it offers everyday activities including play, art, music, movement, and hydrotherapy. The goal is to bring an element of normalcy and joy into their lives at a time when they need it most. And, as Dr. Hull points out, “Our families don’t see a bill.” Kathy Hull tells the story of George Mark Children’s House in an inspired TED Talk, delivered in November 2016. On our mortality, for example, she says, “In the end, we can’t control how long any of us lives, but we can control how we spend our days, the spaces we create, the meaning and joy that we make. We cannot change the outcome, but we can change the journey.” This TED Talk –Stories from a Home for Terminally Ill Children” – will touch your heart.
Gnome House in Tribute to Allie “Little Owl” Fisher (April 25) – The Fisher family lost their Allie in 2013 from pediatric brain cancer. She was 3½ at the time. In the first winter after Allie died, Allie’s parents – Kelly and Kyle – along with Allie’s sister, Evie, were out on a family walk in Tomahawk Creek Trail (Overland Park, Kansas), and by chance they found an enchanting little gnome house built by an anonymous artist into the hollow of a tree. There were blank slips of paper there and a marker, and they wrote “In memory of Allie Fisher. 10/16/09 - 6/13/13. Love you Little Owl!”). The owl is one of the symbols that they associate with Allie. Allie loved owls and had a treasured stuffed animal owl, and she especially liked to be called “Little Owl.” Well, after the winter’s thaw and the advent of spring, they family was out again on the path, and this time they found a new gnome house with a hand-carved wooden door inscribed with the words “Little Owl.” This tribute to Allie was an inspired act of kindness that motivated the family to launch a host of charitable activities centered on fighting pediatric brain tumors. Google “Team Little Owl” to learn more, and watch “The Gnomist: A Great Big Beautiful Act of Kindness” for the inside scoop on the mysterious artist “paying it forward” in Firefly Forest, one little gnome house at a time: The Gnomist
Alan Pedersen Steps Down as ‘Compassionate Friends’ Leader (April 26) – On Tuesday, April 25, The Compassionate Friends (TCF) Chairman Glen Lord announced that Alan Pedersen has resigned his position of Executive Director, effective October 1. In a message to the TCF family, Glen thanked Alan “for all he had done and all he will continue to do providing hope to the hurting.” Under his leadership, Alan improved communication, leadership, and coordination within the organization. Glen noted that “it has been a privilege to witness how this has brought our organization forward.” Alan himself – in a note that accompanied Chairman Lord’s announcement – acknowledged the honor of serving in this role (since 2013) and “is optimistic about our future as we continue to grow and fulfill our vision that everyone who needs us finds is and everyone who finds us will be helped.” Alan initially established a celebrated reputation in the bereaved community as a singer-songwriter of beautiful pieces, initially created in tribute to his daughter Ashley, who died in 2001. Here’s a recording of Alan singing a song from his first CD – it’s called,One More Yesterday.”
Heroine “Takes Everything in Its Path,” Writes Grieving Father (April 19) – Alexis Fusz – who went by Lex – died at age 25 from an overdose of heroine on December 11, 2016. Her dad, Gary Fusz, urges others: “To families everywhere, don’t give up hope on your children, talk to them … support them emotionally, and love them dearly ... You never know the last time you will hear their voices.” Before Lex died, at a time when he thought she was on a comeback trail, her father promised Lex that he would help spread awareness of heroine’s destructive power. Fulfilling that promise – out of love for his daughter – Gary has released an essay that tells her story. On heroine’s destructive path, he writes: “I knew nothing about heroin at the time but can say now in all certainty it destroys families, friendships, and takes everything in its path in a downward spiral like a tornado. It hurts every person and everything in its path. The person you love is there but will do anything to get the drug: steal, lie, whatever he or she has to do, without remorse.” Read Gary’s entire letter here.
Dad Makes Good on Promise to Tell Son’s Story (April 28) – When Jerry Hendon was putting together “It’s Been a Good Life, Dad” – a book about his son, Kevin – he included a section of Kevin’s poems that ended with this “unfinished” poem by Kevin:

I look upon the twinkling star
And wonder how far away you are.
I’d like to leave this world behind
And join you in your glory in the sky.
To leave my body and its miseries,
To shine with hope and love.

Kevin Hendon died from Cystic Fibrosis at the age of 18 in 1986. Before he died, he asked his dad to tell his story, and Jerry promised that he would. Thirty years later, in 2016, Jerry made good on his promise in a touching tribute to his son: “It’s Been a Good Life, Dad: My Son’s Struggle wth Cystic Fibrosis.” Jerry’s four-part biography on Kevin is now featured on the Starshine Galaxy Foundation website (that includes a link of Van Halen paying a surprise visit to Kevin in the hospital). Read more about
It’s Been a Good Life, Dad”:

Time Again to “Paint the Town Rhett” (April 17) – Relax, paint, and laugh for a purpose … Community members in and around Elgin, Illinois (west of Chicago), will once again convene to “Paint the Town Rhett” – a fundraiser to support research into myocarditis – a little-known viral disease of the heart. This year’s event on Saturday, May 20 – the fourth annual – is held in memory and honor of Rhett Lundy – a 14-year-old young man whose life was claimed by myocarditis in May 2013. The event kicks off mid-day with lunch & entertainment, includes a 50-50 raffle and silent auction, and is followed by the painting fun, which is a “make-and-take” activity, guided by a dynamic, talented instructor who guarantees that “no experience is necessary”! The Lunch/Paint Combo is $60 at the door. Other participation options are available, and advanced registration features discounted prices. When the $40,000 fundraising goal is reached (the effort is over half-way there!), a Research Grant will be established by the Myocarditis Foundation in Rhett’s name. According to Rhett’s parent’s, Vickie and Steve, it is the family’s hope “that Rhett’s light may always shine.” Check out all the details here.
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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 © 2017 Starshine Galaxy Foundation, All rights reserved.

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