KINGSTON – There’s an adventurous side to David Williamson.
The 2-year-old, who calls himelf “Ijah” – short for his middle name, Elijah — likes Dora the Explorer, likes to go to the zoo, likes animals and fish, and likes to draw his ABCs.
In Minnesota for tests to see if doctors can transplant insulin-producing islet cells from his pancreas to his liver, he did what any kid does once he has the chance: He hit the hotel pool.
Ijah is as courageous as he his adventurous.
Watching him swim and play with other family members, you wouldn’t know this is a boy who knows pain, who knows what it feels like when digestive enzymes get blocked in the pancreas and start digesting that organ from the inside out.
He has the unwelcome distinction of being one of 10,000 children this year to be diagnosed with pancreatitis. And he’s on tap to become the youngest child in the U.S., and possibly the world, to have his pancreas removed and insulin-generating cells transplanted to his liver or elsewhere is his abdomen.
On his journey to good health, Ijah and his family are going to get some help — financial and emotional — from the community and some ol’ rock ’n’ rollers.
The Greater Kingston Chamber of Commerce is teaming with Glen Bui of Born To Be Wild to present the Victory Music Festival June 29, 4 p.m., at Mike Wallace Park.
This is a free event created to raise awareness of local children being treated for life-threatening diseases, and to raise money for Seattle Children’s Hospital where most of the children are being treated. In addition to Ijah, Suquamish Elementary School student Carmen Garringer is being treated for extraosseous Ewing’s sarcoma, and Vinland Elementary School student Ian Gunnell is being treated for a rare form of leukemia. Donations will be accepted at the event.
The headliner is Born To Be Wild, comprised of former members of Steppenwolf, Magic Carpet Ride, Savannah Nix and Pegasus. Christine Salazar & Her Rad Band (www.christinesalazarmusic.com) will open.
In addition to food and craft vendors from the Kingston Farmers Market, commemorative T-shirts will be available and the Kingston-North Kitsap Rotary Club Beer Garden will be open.
Bui, Born to Be Wild’s guitarist and manager, and Colleen Carey, Kingston Chamber executive director, hatched the plan for the event after a benefit concert for “Caring for Carmen” in Poulsbo.
Born To Be Wild (www.magiccarpetrideinc.com) devotes most of its performances to charitable causes. A New Year’s Eve performance at One Ten Lounge raised $1,000 for Coffee Oasis. As Magic Carpet Ride, the band drew an audience of 500 to a 2010 concert in Saratoga, N.Y. to benefit an organization that serves individuals with disabilities and their families. More than $70,000 was raised.
In 2009, the band played a special concert for the Thurston County Boys and Girls Club at the Great Wolf Lodge; the event raised more than $400,000. “We’re really enjoying doing benefits,” Bui said. “We’ve all played the arenas and seen thousands of people in front of us. This is a better feeling. To walk away and know we’ve helped someone, even if it’s one person, it’s the best feeling you can ever experience. It’s better than playing in front of 20,000 people.”
Carey’s hope is that by introducing the children to the community on this large scale, their families will receive an outpouring of help — from financial assistance to child care to yard work.
“The burden on these children and their families is unimaginable to most of us,” Carey said. “I was very young when I was diagnosed with malignant melanoma. Thanks to the research and care provided by Seattle Children’s Hospital, I survived and now I am grateful for the opportunity to help in any way I can.”
Sheila Williamson, Ijah’s mother, said the support makes a big difference in her family’s life.
“Thankfully, we have been blessed by several members of the community who have reached out to help us in times of need,” she said.
“For instance, when we spent nearly a week not able to sleep because David didn’t sleep for nearly five days, friends in the community made dinners to help out. Our entire life revolves around getting him the therapy he needs and trying to reduce his pain. He is a happy boy and his pain tolerance hides a lot of what he feels, but at night when he is sleeping, we can see his little abdomen contracting after a day of play. It’s a hard thing to watch.”
The Williamsons flew to University of Minnesota Amplantz Children’s Hospital for tests on June 9 and were expected to return home June 13. Ijah turns 3 on June 18.
When Ijah has surgery at Seattle Children’s Hospital, doctors will likely remove his appendix, gall bladder, spleen, a portion of his small intestine, as well as his pancreas.
“It is absolutely scary,” Williamson said. “He’s tiny, so there are risks.”
Pancreatitis is hereditary. Ijah’s dad, Tim, an electrician, had his appendix removed when he was a child but was diagnosed with pancreatitis only a month ago, Mrs. Williamson said. Ijah’s sister, Aleksys, 11, is going into sixth grade at Gordon Elementary School. When she was 5, stents were implanted in her pancreatic ducts to prevent blockages in that organ. She is otherwise healthy.
“Because it isn’t pancreatic cancer and it is rare in children, it is often misunderstood,” Williamson said.
The family started the Foundation for Childhood Pancreatitis to raise awareness about pancreatitis and prevent misdiagnoses. Inflammation of the pancreas is believed to be a cause of pancreatic cancer. The Williamsons hope to start an awareness and fundraising event, KidsHOPE walk, and will have a booth at the Victory Music Festival.
To be a sponsor or make a donation to the music festival, contact Carey at 297-3813, email director@kingstonchamber.com.