TINA L. SCOTT
EDITOR
This Saturday, Feb. 19, Merrill Area Community Rides (MACR) will host their 6th Annual Sleds ‘N Jams Snowmobile Ride and Poker Run Fundraiser at Kathy & Cal’s Club 64, 2405 W. Main St., in Merrill. Poker run cards will be distributed beginning at 10:30 a.m. ($10 donation per card requested)(50/50 payback) and a guided snowmobile ride will depart at 11;00 a.m. sharp ($30 donation per vehicle requested). Don’t have a snowmobile? No worries. ALL vehicles are welcome and encouraged to participate in the poker run.
Seven stops will be on this year’s route – including Overboard Bar, Hydaway Bar, Dugout Bar, Hub Inn, Z’s Fork Horners, and Gleason Bowling Center – and participants are free to visit them in whatever order they choose, then returning to the final stop, Kathy & Cal’s Club 64, by 6:00 p.m. Poker run drawings, music by Firsthand High (6:00-10:00 p.m.), and prizes and cash raffles will begin at that time and continue throughout the evening.
Kathy & Cal’s opens at 4:30 p.m. Saturday, but is asking anyone who wishes to dine-in that day to make reservations no later than Friday, Feb. 18.
Proceeds from this year’s event will be donated to the McCaskill family of Merrill to assist with medical expenses for their two sons who were recently diagnosed with a rare genetic disorder called Glycogen Storage Disease Type 9a (GSD IXa). This specific rare form affects the liver and, if not managed properly, can enlarge the liver which could ultimately lead to irreversible liver disease (cirrhosis) and can also slow growth and development.
Symptoms presented as hypoglycemia and lethargy when both Denver McCaskill (now age 12) and Cameron McCaskill (now age 9) were as young as 2, their mother, Kimberly McCaskill said, but it took many years, hospital visits, and a mother’s determination to finally get that diagnosis. And it’s been a rough ride for the family, with Kimberly getting up multiple times throughout the night for many years, to wake the boys to eat to keep their blood sugars regulated, long before they were finally diagnosed. Along the way, they’ve discovered other challenges and limitations and ways to help the boys cope.
Denver and Cameron cannot take too hot of showers and tend to overheat easily, causing nausea and vomiting, Kimberly said. Neither can tolerate too much vigorous exercise. (“That’s fun to monitor at school,” their mom said.)
Both require a snack before bedtime consisting of a complex carb and protein, regular snacks at school, and regular blood sugar checks. And “both boys need to take extra precautions with illness because it can easily end up causing acidosis, which can be fatal,” Kimberly said.
“The diagnosis finally came after our youngest, at age 8, was ambulanced to UW American Family Children’s Hospital in Madison,” she said. “At this time, very few doctors specialize in treatment for it. We have a care team through UW and now most recently will be having to travel to Chicago.”
Kimberly explains what she’s learned about this rare disease both of her sons inherited: “Glycogen builds up in the liver. When the body needs more energy, normally enzymes break down glycogen into glucose and send it out into the body. When someone has GSD, they are missing one of the enzymes (or it’s low performing) that breaks it down and therefore, it builds up in the liver.”
“Both of our boys struggle to keep their sugars balanced. They have to constantly monitor stress (as best we can in this household!), exercise, body temperatures, hydration, food intake, etc.,” she said. They especially cannot go long periods without eating.
“Further research is needed to completely understand long-term complications of the disease progression into adulthood,” Kimberly said. “For now, they receive annual echocardiograms and liver ultrasounds to monitor things. Meticulous adherence to a dietary regimen may reduce liver size, prevent hypoglycemia, and allow for proper growth and development.”
“We have to always be conscious of diet and activity levels and hydration for them,” she said. “In fact, Cameron was recently in the ER again with blood sugars in the 50’s, and we may have to treat him with evening doses of cornstarch. For now, I wake him at 3:00 a.m. to eat.”
“Every family has their own struggles,” Kimberly said. “Many are actually dealing with way more extreme health issues.”
“But our story is important to me and because of this being an inherited gene, I want to be a resource for our family.”
She is also willing to be a resource for others if they have questions or are curious about anything and invites them to reach out to her. “I have had years of studying!” she said.
The McCaskills said they are very humbled that their family was chosen to be the recipient of this year’s fundraiser. “The money raised will help with the ongoing costs associated with the travel and treatment we will have to continue for the boys,” Kimberly said. “For Cameron, who has begged for a dog for years, he would prefer the money go towards the training of a canine able to detect blood sugar drops.”
“We cannot begin to express how grateful we are for the continued outpouring of support from the Merrill community and abroad,” said MACR Board Chair and Co-Founder Jeremy Ratliff.
“Our sole goal as a charitable organization – founded and focused in the Merrill community – is to help and support our neighbors in need, As we have grown as an organization over the years, so has attendance at our events and the financial support we have been able to provide to our support recipients. We could not do what we do, without the amazing, generous support of our neighbors and the Merrill small business community!”