A recent CNN story about a gravely ill girl’s choice to die at home rather than in a hospital had such an emotional impact on two Conejo Valley residents that they decided to take action.
Children’s book author Will Thach was stirred by the story of Julianna Snow, a 5-year-old girl from Seattle suffering from a severe hereditary neuromuscular disease called Charcot-Marie-Tooth (CMT). There is no cure, and even the slightest cold could prove to be fatal.
“I watched the story on TV with a few of my friends and knew I had to do something to help,” said Thach, a Malibou Lake resident who wrote The Girl Who Saved Christmas. “My friends told me to send her my book. And I said, ‘of course, she should have this for Christmas.”
Shortly thereafter, he received a note from her mother, Michelle Moon, with information about how to help. “I told her I’d like to donate $1 from the sale of each book,” he said.
Moon was genuinely moved by the offer. “We were touched when he got the book to us, and it’s gotten only better from there,” Moon said in a note to CV Happening. “I’ve never tried to raise money for anything before, and it’s been more difficult than I thought…so every little bit counts!” The money will go to CMTA, the national organization that raises awareness and funds for CMT research/treatment, according to Moon.
Angelo Jayamantri, owner of SweetXO in Agoura Hills, said he, too, was affected by Julianna’s story and wanted to help. “I contacted Will to see what we could do,” he said. The two teamed up by scheduling a book signing event on December 23 from 4-7 p.m. at SweetXO. Jaymantri will donate 15 percent of the sales to Julianna’s charity. In addition to meeting Thach, Wednesday’s event will feature children’s activities and free hot chocolate.
Moon said that Julianna loves the book so much that she has memorized some passages. “It’s a beautiful book – beautifully put together and written,” she wrote. “And I like that it combines the tradition of Santa with the true meaning of Christmas–that’s hard to find.”
For additional information and to make a donation, go to www.cmtausa.org/donate/