Youth inspires ND Highway Patrol in fundraising for Duchenne
Highway Patrol raise funds for ND youth’s cause
An 11-year-old boy fighting a brave battle with a rare form of muscular dystrophy is giving the North Dakota Highway Patrol inspiration in its latest fundraiser.
When considering a cause for their annual fundraiser, officers didn’t have to look further than their colleague, Trooper Edwards, whose son, Grant, was diagnosed with Duchenne muscular dystrophy at age 4. Rather than dwelling in grief, the Edwards family asked doctors what they could do. The answer was raise to awareness and funds, so they began fundraising for a cure with runs, walks, T-shirt drives and online campaigns.
Due to the coronavirus pandemic, Grant’s parents, Steve and Mallory, were concerned about fundraising efforts falling short this year. Then the Highway Patrol stepped in. The Edwards’ hope is to see $10,000 donated by Nov. 30, bringing the sum they have helped raise since 2013 to $40,000.
For the third consecutive year, NDHP Col. Brandon Solberg has granted an exemption to the dress code policy for female troopers, allowing them to wear nail polish, and for male troopers, allowing them to grow beards or goatees, for #NoShaveNailPolishNovember to raise money for the CureDuchenne organization.
“When you are doing something for Duchenne, you’re doing it for a lot of people, and it’s helping, no matter what you do,” Mallory Edwards said.
Grant’s parents considered their son a strong and healthy child until they noticed he was having difficulty walking up stairs. Living in Montana at the time, they were referred to a pediatric neurologist, who diagnosed Grant’s Duchenne when he was 4 years old.
The family has travelled to Denver, Ohio and Billings, Montana, to see specialists. Grant is on a steroid treatment and engages in physical therapy two days a week. He has maintained his ability to walk and even run a little.
“He doing very well,” Mallory Edwards said. “We definitely keep the positivity in our household. We try never to be negative. There’s always the sadness that, as a parent, you have, but I think just with staying positive, it makes you have such a better life. I feel like our life is so much more fulfilled.”
She explained the family takes time to make memories, such as creating a scavenger hunt at Halloween rather than letting the occasion pass uneventfully because trick-or-treating had to be canceled.
“You love seeing that smile, and that, seriously, is what keeps you going,” Mallory Edwards said.
Grant doesn’t let the disease impede his childhood.
Grant, currently in homeschool due to the coronavirus pandemic, lists math as his favorite class and enjoys drawing. Favorite activities he enjoys with family include building with Legos and constructing forts with his brother, Christian, 8, and hunting and fishing with their dad.
Presently, he’s got Christmas on his mind.
“That’s my favorite holiday,” said Grant, who likes the first snowfalls, too.
His mother calls him their biggest cheerleader when they are fundraising.
“I think it’s cool that they are doing it,” Grant said.
“Science is moving fast right now,” said Tiffany Cook, senior director for CureDuchenne Cares and mother of a son with Duchenne. The number of treatment trials in progress is at its peak. However, Cook said a cure remains a long way off. The gene connected to Duchenne can be interrupted in many ways and each interruption requires its own research.
“We have a lot to do, and we’re going to do it. CureDuchenne was founded by a mom and dad whose son was diagnosed with Duchenne when he was five, and their mission was to fund early science. So we’re constantly looking at the landscape and finding what’s out there that has the potential,” Cook said. “But we need many, many shots on goal, and so that’s really what we’re focused on.”
The gene linked to Duchenne is carried on the X chromosome. Because boys have just one X chromosome, they are vulnerable if the gene is faulty. However, there are very rare cases in which girls have been affected.
Duchenne not only affects muscles but, over time, it can affect the heart and lungs, resulting in a shortened life span. Cook said a cure could involve a variety of combined therapies, but in the meantime, smaller steps to improve outcome are being made.
“Wherever we can educate, from the family level to the doctor level to the science level, it’s just extremely important. If everyone knew what Duchenne was, that would make me so happy because it would help,” Cook said.
Increased knowledge about the disease also is allowing earlier intervention.
“Early intervention is extremely important. Earlier diagnosis is important so that we can get physical therapy going, get children on the corticosteroid regimen,” Cook said. “Just kind of hold it off and slow it down.”
Although founded with research in mind, CureDuchenne developed CureDuchenne Cares to engage with families to provide education and encourage living positively with the disease.
“Really at the end of the day, we are working for this cure, but we’re also living – living life to its fullest and really embracing every moment,” Cook said. “We want to make sure that they know that there’s light at the end of the tunnel and there’s a community that is here, ready to embrace and help them go through this journey.”
Donate for Duchenne
During November, the North Dakota Highway Patrol is raising money for research into Duchenne muscular dystrophy.
Funds are being designated to CureDuchenne, a global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne. A leading genetic killer of young boys, Duchenne affects more than 300,000 individuals living today, including 15,000 in the United States and about a handful in North Dakota. Donations toward a cure can be made at cureduchenne.org.
To participate in the Highway Patrol campaign this month with a donation, visit: https://give.cureduchenne.org/campaign/ north-dakota-highway-patrol-no-shave -nail-polish-november/c307593.