It wasn’t too long after her son’s first birthday when Julie Locke heard the words no mother should ever have to hear. Her first and only child — blonde haired, blue-eyed Dax — had AML M7 leukemia, one of the rarest pediatric forms of the disease. There were experimental treatment options but success had been limited with them.That was in 2008.After ineffective, painful rounds of chemotherapy and stem cell transplants, the doctors and nurses of St. Jude Children’s Research Hospital admitted that they had done all they could for Dax. The Lockes chose to return to their hometown of Washington, Illinois to spend Dax’s last few months surrounded by the things that were familiar to him. “After we came home from St. Jude and knew there were no treatments left for Dax's cancer,” says Julie, “we decided to decorate for Christmas early because we were not sure if Dax would live to see Christmas. It was in October before Halloween and people immediately were wondering, ‘Why the Christmas lights?’”News of Dax’s courageous fight against leukemia spread, and it didn’t take long before others, even complete strangers to the Locke family, began to show their solidarity by putting up holiday lights for Dax. “That was the beginning – first our neighborhood, then our home community of Washington. From there, CNN picked up the story and decorations went up throughout the country and actually all over the world. Soldiers in Afghanistan put up Dax trees. We started a website, decoratefordax.com, asking for people to send their pictures.”Living one day at a time under a new philosophy of cherishing every moment, the Lockes browsed those pictures with Dax, pointing out the Christmas lights that he loved so much. Although the doctors were not sure Dax would make it until Christmas, he was able to spend one last holiday filled with lights, beauty and the people who loved him most. He passed away on December 30, 2009 — approximately one-and-a-half years from the date he was diagnosed and six months shy of his third birthday. As holiday lights were replaced with celebration of a new year for many, Julie Locke faced the dark night of the soul that every parent fears the most. But it was there, in the middle of her profound grief, that she determined her son’s legacy would not end. As part of her own effort to heal through helping others, she created the “Cherish Every Moment” Dax Locke Foundation, an organization founded with the initial purpose of raising $1.6 million for St. Jude — a day’s operating budget for the hospital that had given Julie the priceless gift of extra time with Dax and had not billed her for any of it. Her efforts have paid off. “We are over the one million dollar mark…$1,006,428,” says Julie. “I believe in my heart that through our efforts and those of others, more cures for childhood cancers will be found in my lifetime.”Through raising money for St. Jude, Julie began to tell Dax’s story; and along with it, the story of families throughout the country affected by childhood cancers and the MidSouth hospital that is working to find cures. Still, she will be the first to admit: while hope has strengthened her, much has changed in Julie’s life. Now, as a single mother of a three-year-old daughter, Madeline, Christmas is mixed with many emotions. “Madeline is so precious to me and of course she makes Christmas so much fun,” she says. “I have a tree I decorate with many of the ornaments that people sent to Dax during his battle with cancer and Madeline knows this is our Dax tree. Madeline and I also have a little party at his gravesite on his birthday and release balloons in his memory. These are the two traditions I do for Madeline in memory of her brother, Dax.”In 2011, a TV movie about Dax Locke’s life was released and entitled The Heart of Christmas. Now available for viewing on Netflix, the movie has created enormous response around the world — from strangers who have both shared in Julie’s loss and were inspired by the work and research of St. Jude Children’s Research Hospital. “Through the movie made from Dax's life and the song that Christian songwriter Matthew West wrote, “One Last Christmas,” thousands of people have found renewed hope and meaning in their lives and have truly learned to cherish every moment with family and loved ones,” says Julie. Despite having learned much from her son’s brief time in her life, perhaps the greatest lesson of Dax’s story is yet to come for Julie. “Grief takes time,” she says. “Although many people have shared how time heals, I wonder if the death of a child is something you ever ‘get over.’ For me, I have each day since Dax left this earth learned how to live ‘with it.’ There are so many questions when a child dies and I still don't have any profound answers or insights, but this I do know: Dax's life was short but was meaningful beyond words. My life has been changed forever by Dax and I continue to hear from people all over the world that have been changed by my precious little boy, too”To learn more about the Dax Locke Foundation or to make a donation, visit Daxlocke.org.
Causes | December 2013
Lights for Dax
A mother’s loss spurs a nationwide effort to raise money for the largest children’s research hospital in the country
Story by Tonya L. Thompson