March 24 race to benefit girl, 2, with rare brain tumor

By throwing on some running shoes and jogging through downtown Walled Lake in the Passion for Life 5K on Saturday, March 24, you can help a little girl who loves kittens, being outdoors, and the “Itsy Bitsy Spider.”

Last June, the Shull family was on vacation visiting family in Canton from North Carolina when they noticed their 2-year-old daughter, Lilli, seemed constantly tired and no longer wanted to walk on her own.

“She was a normal 20-month-old, walking and talking,” said Lilli’s mother, Jennifer Shull. “And then suddenly, she was really sleepy all the time. She was also having trouble walking on her own anymore without holding our hands.”

Concerned, Shull called her pediatrician in North Carolina who instructed her to take Lilli immediately to the pediatric emergency room.

The doctors at St. Joseph Mercy in Ypsilanti then sent the Shulls to Mott Children’s Hospital in Ann Arbor because they were confident there was something wrong neurologically.

Unfortunately, they were right.

Lilli was diagnosed with AT/RT (atypical teratoid/rhabdoid tumor), a rare, malignant, and extremely aggressive brain tumor. It is most often diagnosed in patients under the age of 3 and, according to St. Jude Children’s Research Hospital, occurs in between 1 and 2 percent of children with brain tumors.

Even after surgery and chemotherapy treatment, the survival rate for children younger than 3 at diagnosis is less than 10 percent, according to St. Jude’s.

Since Lilli’s diagnosis, the Shull family has relocated to Canton for Lilli to continue treatment at Mott’s Children Hospital.

Her father, Mike, who had returned from a 9-month deployment flying helicopters with the U.S. Marine Corps in May 2011 and was set to be a flight instructor at the Naval Flight School in Florida that July, is currently attached to the ROTC unit at the University of Michigan for a year to be near his daughter and family.

Over the past year, Lilli has undergone six rounds of chemotherapy and has just finished six weeks of proton beam radiation in Chicago.

“She’s doing really well,” said Shull, who was encouraged by a friend to apply to be Passion for Life’s 2012 Inspirational Family. “We don’t know the status of the tumor yet. We go for an MRI on Thursday.”

Every year, Passion for Life hosts a 5K run/walk and 5-mile run to raise funds for the year’s inspirational family and to conduct research at Mott Children’s Hospital.

Nebjosa Stokjovic, a teacher and coach at Walled Lake Central High School, founded the non-profit organization in 2008.

The original inspiration for the event was a fellow coach and teacher of Stojkovic’s whose daughter was born with a congenital heart defect. Since then, the race has raised funds for three other families with children suffering from various diseases and injuries.

The Shull family was chosen from many that applied, according to Stojkovic.

“To be quite honest with you, there is no ‘right choice’ in this matter — all of the families are deserving,” Stojkovic said. “Ultimately, Lilli’s story, and that of the Shull’s, captured all of us in such a way that we decided it was time for the Passion for Life Organization to address the need for research in Pediatric Brain Cancer Research at … C.S. Mott Children’s Hospital.”

Each year since the organization’s inception, the number of race participants and the funds raised through the 5K have grown. Last year, there were almost 1,000 runners.

And Stojkovic believes they will have even more participants this year.

“We are well ahead of where we were at this time last year and we are fully expecting over 1,000 participants in 2012,” he said. “It is the biggest/best charitable run in Michigan during the month of March.”

Registration is from to 8 to 10 a.m. on March 24, with the race starting at 10 a.m. There will be both a 5K run/walk and a 5 mile “Run Around the Lake.”

The race will be held in downtown Walled Lake, beginning at the Bayside Sports Grille.

The fee to register on race day is $20 for those 12-years-old and under, while those older must pay $35. For those wishing to pre-register online at www.passion-for-life.org, the fees drop to $15 for participants 12-years-old and under and $30 for everyone else. Pre-registration ends at 5 p.m. on Thursday, March 22. The race fees include a long sleeve T-shirt.

Those wishing to raise funds for the race can also request a pledge packet. You must raise $100 in pledges to participate and all packets must be mailed by Saturday, March 17.

Those wishing to make a donation can do so at www.passion-for-life.org or by making out a check to Passion for Life Organization and sending it to 2380 Bevin Court, Commerce Township, 48382.