HOISINGTON - Little Cameron Grubb and his family have been through the heartache of battling a rare life-threatening disease, as well as the joy of knowing the community has their back.
Since the battle’s end is not in sight yet, a pancake-and-sausage benefit lunch is being organized to raise much-need financial support, Coordinator Jettie Zoller said.
The Chris Cakes crew will be flipping flapjacks in Cameron’s honor from 11 a.m. to 2 p.m. Sunday, Dec. 6 at the Hoisington Activity Center. The $6 tickets are available at the door, Town & Country Supermarket and First Kansas Bank locations in Hoisington, Claflin and Great Bend.
In addition, the Cameron Grubb Medical Fund has been established at First Kansas Bank.
Cameron will make a return trip to Boston Children’s Hospital sometime after Christmas for the first of two kidney auto-transplants. This surgery entails moving his organs into the lower abdomen.
All proceeds from the fund-raising efforts will help the Grubbs pay for medications, meals, lodging and other travel expenses. The first trip in 2014 lasted three months and involved three surgeries.
Most recently, Cameron spent the month of July in critical condition in Boston. He was on life support and dialysis when clots in his arteries shut down his kidneys. This resulted in congestive heart failure and respiratory failure.
He traveled to Boston by MedFlight in July and returned home in August.
KanCare insurance is taking care of many major medical costs but it cannot come close to meeting all the needs, Zoller commented.
“We encourage the community to rally around this great family as they face the next stage of Cameron’s treatments,” Zoller said. “I know how difficult this is for them but I also know they appreciate the community’s support.”
Cameron, a Roosevelt Elementary kindergartener who recently turned 6, is the son of Mitch and Jackie Grubb of Hoisington. The youngster was diagnosed 18 months ago with an extremely rare condition called Midaortic Syndrome (MAS) with renal artery stenosis.
“He had developed a scar inside the aorta, which cut off blood flow to his kidneys and lower half of his body,” Jackie said. “He has been at risk of stroke, heart failure, aneurysms and kidney failure. Cameron is one of only 60 children seen by the Vascular Anomalies Center in Boston.
“The good thing to come out of all this is Cameron has taught the doctors what to do and what not to do,” she continued. “They have even talked about naming a surgical device after him. He is the first kid to have success with this tissue expander. This positive side keeps us strong; Cameron’s life has a purpose.”
While Cameron and Jackie were in Boston for three months last year, Mitch continued working six days a week at Beaver Grain. Neighbors and friends pitched in to help with the Grubbs’ three other children – Brittani, 17; Ethan, 9; and Trenton, who is 7 and answers to “Tee.”
Brittani noted that when she is not at work or school, she can tend to her little brothers. But other times, the family relies on the kindness of the community.
Jackie keeps everyone posted through CaringBridge.org, which she acknowledged is a valuable outlet for her. “It is a great way for me to keep people up-to-date but it also helps me emotionally as I write about what is happening.
“It is sometimes difficult to keep people in the loop because Cameron may be fine one day but not the next,” she added. “When things happen, he is in trouble immediately.”