Meet Charlie...cute, lovable, bright, almost four-year-old son of John and Abby, who met in London, married in Massachusetts, lived in Australia, and now settled in East Lansing, Michigan, with Charlie and their 8-year-old daughter, Esther.

Diagnosed after an April 1, 2011 MRI, Charlie's first symptoms included headaches, a stumbling gait, and double vision, although a CT scan just one week earlier showed no evidence of a tumor.

With the immediate large dose of steroids, Charlie began exhibiting uncontrollable, inconsolable, obsessive-compulsive behavior. Combined with the recommended six weeks of radiation at Sparrow Hospital in Lansing, Charlie's medical regimen began in earnest.

With great community spirit, surrounded by friends and family, both Charlie and Esther were baptized at People's Church in East Lansing, April 10, 2011, the same week Charlie's radiation began.

The effects of the heavy dose of Decadron on Charlie's moods, along with his insatiable appetite, proved challenging for the entire family. Fortunately, a May 9 MRI more than midway through radiation therapy looked promising. By the completion of radiation and a gradual reducing of his steroid dosage, his parents were reporting more "good days," "playing more" and enjoying childhood activities.

By summer his condition, including both mood and mobility, improved greatly, and the family approached summer on an upbeat note. At a June trip to Potter Zoo in Lansing, Charlie seemed to exhibit his true self --- a compassionate animal lover. Riding the pony, touching the snake, feeding the penguins, and "getting up close and personal" with an ostrich were so reminiscent of the Charlie before cancer. Summer also gave Charlie the time to splash in pools, visit with relatives, and enjoy the company of playmates. Abby and John graciously welcomed his "honeymoon" period.

Attending the "Art for Charlie" Art Show, Abby and John's preliminary effort in establishing a non-profit charity in early June, a July Make-A-Wish trip to the San Diego Zoo, complete with balloon ride, and a trip to Beaver Island in Northern Michigan with family from England, Charlie's summer passed quickly and enjoyably.

Beginning a ketogenic diet through a nasal drip at Sparrow Hospital in August made traveling difficult; however summer fun continued when additional family members arrived from England. An unrelated-to-DIPG, viral infection sent Charlie to Sparrow in late August. When the regimented diet became unbearable and meals less than pleasant, it was little Esther who offered words of wisdom about the strictness of Charlie's diet and his ability to enjoy life. At that point, John and Abby slackened on the regiment of Charlie's diet.

With recurring symptoms and an eyelid that didn't fully close, Abby became alarmed. Charlie had another MRI and the tumor appeared stable, but there was an appearance of fluid retention in the ventricles of the brain. With a report of "uncertainty" by another clinician, followed by a report of "stable" by a third, Abby and John applied for Charlie's participation in an advanced imaging study at NIH (National Institute of Health) in Bethesda, Maryland. Since then and a second MRI at NIH, Charlie's tumor is deemed the same size and the same level of activity since radiation. In fact, Charlie was scheduled for another MRI at NIH this week.

John, who is a professor at Michigan State University, is eagerly awaiting summer vacation. Originally, the family considered a road trip with the family to Oregon and the Canadian Rockies, but decided to take Charlie and Esther to visit their godparents in Wisconsin. For now the family is making the most of the great times they are enjoying with Charlie, Esther, and their newly-acquired golden retriever, Boston. The Wallers are thankful for family, friends, and community and the widespread support they have received, including the support from SFSF.

SFSF celebrates its youngest fundraiser  

Frank Miklaski, with a stuffed giraffe which once belonged to Sophie, and was a "welcome to the world" gift from Aunt Emily.

SFSF announces its youngest fundraiser, Francis Joseph Miklaski of Frisco, TX. Little Frank, son of Charly and Dawn Miklaski, Emily's brother and sister-in-law, challenged friends and family, just a few weeks prior to Dawn's expected due date, to guess the actual birth date and time, weight, and length through an on-line baby pool, www.bebepool.com.

The intricate and no-fee pool assigned points for each of the exact guesses, along with plus and minus points for proximity to the actual numbers. Each person participating paid a $5.00 entry fee, with half of the total fees collected earmarked for SFSF and the other half to the winning entry. There was no limit to the number of entries each individual could make for each $5.00 "bet."

Francis Joseph, namesake of Emily's dad, arrived on April 17 (yes, Dawn's expected due date) at 1:53 pm (CST), weighing in at 9 lbs., 2 oz, 22" in length. Christine See, a friend of Dawn's family and an employee of Dawn's father, Paul Heffernan, had the winning entry. (See http://bebepool.com/heffyd). Christine generously donated all of her winnings to SFSF. With the 38 entries and others who entered the pool making additional donations, Little Frank, was responsible for adding $235 to SFSF's coffers. SFSF thanks the Miklaskis for their innovative fundraiser and welcomes Frank to the world of SFSF supporters.

When announcing the winner, Charly said, "We are very proud that the first thing our new baby boy did in his short life was help raise money for one of our favorite charities."

An awareness event confirms rainbow's meaning

In effort to promote awareness and fulfill one mission of SFSF, Board Secretary Susie Miklaski spoke at the Riverview, MI, Relay for Life Luminary Ceremony at Young Patriots Park, Saturday, May 18. Two years ago, Susie spoke at the evening event, focusing on the lessons Sophie learned, and taught, during her short time here on earth. At this year's ceremony Susie spoke about the lessons learned from Sophie's passing, emphasizing her rainbow...and just how meaningful it has become to The Foundation, and how it has been a sign to those who continue to do her work. The DJ "got the message" and chose to play "Somewhere Over the Rainbow" as participants circled the pond for the ceremonial silent walk amid the lighted, memorial bags.

Two days later, Susie received this email from a Relay participant:

"... It was really amazing to hear the story about the rainbow at the Relay. The reflection from the lights shining on you made the colors of the rainbow on the back of the stage. I thought it was ironic. Also, just another sign that she is with you."

SFSF establishes Ambassador Program

Due to an overrun of the 2012 SFSF Annual Appeal, SFSF has over 200 extra brochures. In an effort to extend the database, increase donations, and spread awareness, SFSF is asking for help in distributing and sending the remaining appeals, by establishing an "Ambassador Program." Those who are able and willing to send brochures to friends, family, and co-workers, (who are not already in the SFSF data base) or who are able to place brochures in appropriate public areas should contact Board President, Emily Quayle, for additional "Ambassador" information.

To date, extra brochures have been sent by Riverview High School's EGAD Club in Michigan, placed in the lounge at Encana Oil and Gas in Dallas, TX, and have been distributed in several doctor's offices in the Cleveland area. Ideas for places of distribution, as well as additional new mailing addresses will be greatly appreciated.