Carson Rhodes is 3, and lives in Wilmington with his parents, Jacob and Jacqualin. Since birth, he has been dealing with a condition known as non-ketotic hyperglycinemia (NKH).
This weekend, Carson's 2nd Annual Tournament For a Cure, a benefit softball tournament, is being held Aug. 14 and 15, on the Upper Field at Living Memorial Park and West River Park in Brattleboro to raise money to help fund research to find new treatments for NKH.
According to the National Organization of Rare Disorders (NORD), non-ketotic hyperglycinemia is “a rare, genetic, metabolic disorder caused by a defect in the enzyme system that breaks down the amino acid glycine, resulting in an accumulation of glycine in the body's tissues and fluids.”
Children with NKH “who survive the neonatal period have severe developmental delay. Most individuals do not reach milestones past those reached by the typical 6-week-old infant,” according to NORD. “Developmental delays can range from mild to profound.”
Only about 500 people worldwide are living with NKH. That's because children who have the condition rarely live past their fourth birthday. There is no cure, but NORD says there are a variety of different treatments that can improve outcomes for some NKH patients. The hope is that genetic therapy might be the breakthrough that helps children like Carson live longer and healthier lives.
According to Carson's mother, Jacqualin, Carson has a mild case of NKH that's being treated with a variety of medications.
“Carson takes five different medications a day,” she wrote to The Commons. “One of those he takes every four hours just to keep his levels balanced. If we can raise enough money, we may be able to start clinical trials using gene therapy. Gene therapy would essentially 'fix' the broken DNA and make it so he wouldn't have to take medication for the rest of his life.”
Carson's great-grandmother, Shirley Squires of Guilford, stopped by The Commons last week to tell us about him, his parents, and the softball tournament this weekend. She said it is the second one that the Rhodes and Squires families have held for NKH research. The first one was held in 2019 and raised about $5,000, but last year's tournament was canceled due to the COVID-19 pandemic.
As of last week, there were six teams signed up for the eight-team tournament. The entry fee is $300. There will also be a 50-50 raffle, and refreshments and t-shirts for sale. To sign up, email Jacqualin at [email protected] or visit “Carson's 2nd Annual Tournament For a Cure” under events on Facebook. A GoFundMe page can be found by searching “Carson's Cure for NKH” on gofundme.com.
Vermont falls in Shrine game
• Two third-quarter touchdowns in the space of 12 seconds proved to be the difference as New Hampshire beat Vermont, 21-0, in the 68th Shrine Maple Sugar Bowl on Aug. 6 at Castleton University's Dave Wolk Stadium.
Brattleboro coach Chad Pacheco and the Vermont squad had to like their chances heading into the second half. They shut down New Hampshire's vaunted running game and battled the Granite Staters to a 0-0 stalemate after one half of play.
Defense ruled the first half. New Hampshire had the ball six times and were stopped on fourth down twice by the Vermonters, had to punt the ball away twice, and turned the ball over twice on a fumble and an interception.
Jack Herrington of Bellows Falls and Elijah Isham of Brattleboro were starters on the defensive line for Vermont, and logged a lot of minutes in the first half. The closest the Granite Staters got to scoring came late in the first half, but they were thwarted as Hartford's Jacob Dwinnell reeled in an interception.
Unfortunately, Vermont had just as much trouble moving the ball and had to kick it away five times in the first half. Brattleboro's Henry Thurber played at tight end/fullback and did his best to give the Vermont running backs some room to move, while Jack Burke of Bellows Falls saw action as a punt returner. Thurber had one catch for three yards.
The Vermonters got the ball to start the third quarter, but again had to kick it away. New Hampshire's running game then got rolling, with an 11 play, 70-yard drive capped by a three-yard touchdown run by Exeter's Ulysses “Uly” Ellis, who carried the ball a total of 17 times for 111 yards. Nashua North's Luca Cunningham kicked the first of his three extra points in the game to give the Granite Staters a 7-0 lead with 4:21 left in the quarter.
Disaster then struck for Vermont on their first play from scrimmage when a pass from quarterback Bassiau Diwara of South Burlington was intercepted by Josh Sharron of Newport and glided in for a 15-yard touchdown. Trailing 14-0 with 4:09 left in the third, the Vermonters were in trouble.
New Hampshire kept the ball on the ground and burned up as much time as they could the rest of the way and got an insurance touchdown with 3:13 left in the game on a one-yard run by Thomas Johnston of John Stark. New Hampshire ran the ball 56 times, and passed only four times in the game.
Diwara drove Vermont down to the New Hampshire 5-yard-line, but a flash of lightning and a rumble of thunder with 50 seconds left to play prompted the officials to stop the game.
• It was the last high school football game for Burke, Herrington, Isham, and Thurber, but all have plans for the fall. Burke will be studying construction management at Vermont Tech, while Herrington has enlisted in the Coast Guard. Isham will be an accounting major at Franklin Pierce College, and Thurber will be studying forestry at the University of Maine.
But the best news from this year's Shrine game was that organizers said it set a new record for money raised for the three Shriners Hospitals in the Northeast. After having the 2020 game cancelled by COVID-19, the fans, the sponsors, and donors came out to make this year's game a big success.
Vermonters at the Olympics
• Elle Purrier St. Pierre of Montgomery, Ilona Maher of Burlington, and Brooke Mooney of Peru were Vermont's representatives to the U.S. Olympic Team in Tokyo.
Purrier St. Pierre, a Richford High School grad, was 10th in the Aug. 6 finals of the women's 1,500 meters with a time of 4 minutes, 1.75 seconds. It was not as fast as her personal best, a time of 3:58.03 that she set at the U.S. Olympic Trials in June. She was the first Vermont native to compete in track and field at the Summer Olympics since Andrew Wheating in 2012.
Mooney, who graduated from Vermont Academy, finished fourth with her team in women's eight rowing, while Maher and her team finished sixth in women's rugby sevens.
And there was one more Olympian with Brattleboro ties that slipped under everyone's radar, Olivia Apps. Longtime local attorney Thomas French tipped me off about his granddaughter, who has dual citizenship and was an alternate on the Canadian women's rugby sevens team.
Apps, 22, is tiny for a rugby player, just 5-foot-5 and 152 pounds, but she's been playing with the Canadian national team since 2017. She is also easy to spot on the field, she lost her hair to alopecia when she was 8.
“It came with not just feeling like I was less beautiful in my face, but I felt like I had to make up for it with my body.” Apps told the CBC in a 2019 interview, which you can see at www.cbc.ca/sports/bodiesofwork/athlete/detail/olivia-apps.
The Canadians, who entered the Tokyo games as a favorite to win a medal, finished 10th, but the young woman whose Twitter handle is “Mrs. Clean” will certainly be back in international competition soon.
Youth Services' Golf Tournament raises more than $15,000
• Ninety-four local golfers, together with strong corporate support, made Youth Services' 36th annual Golf Tournament on July 28 at the Brattleboro Country Club a rousing success. The tourney raised more than $15,000 to help underwrite the agency's programs.
The Brattleboro Country Club team of Melanie Boese, Paul Jones, Zach Evans, and Dave Evans won First Gross, with the Silver Forest team of Dave Murray, Shawn Keniston, Jim Kilburn, and Nate Stoddard winning First Net.
The Berkley & Veller Greenwood Country Realtor team of Adam Palmiter, Brian Knowles, Justin LaRock, and Andrew Loney took Second Gross with the team of Chuck Dissinger, Mark Anderson, Rich Cogliano and Paul Symanaski taking Second Net.
Melanie Boese won the prize for the Women's Longest Drive. Iedje Hornsby took Women's Closest to the Line, with Lauren Donahue winning the prize for Women's Closest to the Pin.
In the Men's Division, Kurt Kwader took the prize for Men's Longest Drive. Dave Harlow took Men's Closest to the Line, with Scott Olmstead winning Men's Closest to Pin. Jamie Spencer won the putting contest.
The Helicopter Golf Ball Drop took place for the ninth year. The Renaud Bros, Inc. helicopter, piloted by Mike Renaud and assisted by Shirley Renaud dropped a bucket of 72 balls from 20 feet above the fairway at the Brattleboro Country Club. The winner of the $3,000 cash prize was Phil George of Edward Jones Investments with ball #60 landing 6 feet, 2 inches from the hole.
All proceeds from the tournament helps support Youth Services' programs, which promotes the healthy development of nearly 1,500 local youth, adults, and families each year. For more information, or to get involved in Youth Services, call 802-257-0361 or visit www.youthservicesinc.org.
Rec. Dept. news
• The Brattleboro Recreation & Parks Department says the Living Memorial Park Pool is open until Aug. 22 under reduced hours, from 1 to 6 p.m. The pool will close for the season on Aug. 22.
• Registrations are now being accepted for the Rec. Dept.'s fall youth activities and sports (soccer, field hockey, flag football, chess, and gymnastics).
You may register for activities in person on Aug. 11 and 12, from 3 to 6 p.m., at the Nelson Withington Skating Facility, located at Living Memorial Park, 61 Memorial Park Drive, or on Sept. 7 and 8, from noon to 6 p.m., in the Rec. Dept.'s Main Conference Room in the Gibson-Aiken Center, 207 Main St.
You may also register for activities by going to Brattleboro.org and print and complete a registration form and COVID-19 release form and mail them with payment included to Brattleboro Recreation & Parks Department, Attn.: Fall Registration, P.O. Box 513, Brattleboro, VT 05302.
Payment for programs will be required to be paid in full before the start of each program, unless other payment arrangements have been made with the Recreation & Parks Director. Payment must be in the form of cash or check only. Checks should be made out to “Brattleboro Recreation & Parks.” For more information, call 802-254-5808.
Senior bowling roundup
• Week 15 of the spring/summer season of the Brattleboro Senior Bowling League on Aug. 5 at Brattleboro Bowl saw first place Team 2 (51–24) draw nearer to clinching the league title, despite a 1-4 week. They now have a six-game lead over second place Team 6 (45-30), which had a 0-5 week.
Team 5 (40-35) remained in third place after a 5-0 week, followed by Team 4 (39.5-35.5), Team 7 (38-37), Team 1 (31.5-43.5), and Team 3 (29-46).
Shirley Aiken had the women's high handicap game (249) and series (675), while Jerry Dunham had the high handicap game (242) and Marty Adams had the high handicap series (662). Team 1 had the high team handicap game (874) and series (2,489).
In scratch scoring, Chuck Adams led the men with a 548 series that featured a 215 game. Marty Adams had a 199 game as part of his 545 series, and Dunham had a 531 series with a 201 game. Nancy Dalzell had the high scratch game (177) and Aiken had the high series (527) to lead the women. Carole Frizzell rolled a 172 game, while Aiken had a 170 game.