Benefits planned for Hamm family after devastating diagnosis of 2-year-old son

Former Gainesville residents Brad and Kursten Suter Hamm, now living in West Plains, say they have been overwhelmed by the generosity the community has extended to them in the last few weeks as they navigate an unimaginably difficult circumstance. 

On Oct. 27, they received the devastating news that their 2-year-old son, Coe, has a rare genetic disorder that rapidly deteriorates the white matter of the brain. It is a condition for which there is no cure, and the version Coe was born with is the most rapid and severe form. Doctors say the condition is progressing quickly, and most children with the late infantile form, which Coe has, die by age 5.

The family has deep Ozark County roots, as both Kursten and Brad are Gainesville High School graduates and grew up here. Kursten’s parents are Ozark County Assessor Jama Berry, Todd Wilbanks and the late John Suter. Brad’s parents are Phil and Becky Hamm of Gainesville. Among Coe’s great-grandparents are Gainesville residents Burl and Linda Hamm, Mark and Rhonda Suter and Jerry and Kay Doubek. His great-great-grandmother, Phyllis Hollingsworth, is also a Gainesville resident. 

When news of Coe’s diagnosis reached the community, residents responded in the only way they knew how: by opening their arms in support and immediately getting to work. Fundraisers began forming to help ensure that while Brad and Kursten take time off work to be with Coe, they are not burdened with financial strain. At least 10 fundraisers are currently planned, including a GoFundMe account that, at presstime Tuesday, had raised over $23,000.

Kursten, who spoke with the Times early this week about their situation, said she and Brad were in St. Louis on Monday preparing for Coe to undergo surgery to insert a feeding tube, as he has lost the ability to eat without medical intervention. Through heartbreaking tears, she recounted the last six months of their lives, a period that began with a perfectly normal 18-month-old boy and has led to their current situation, where their toddler has regressed into an infantile state. He can no longer move his arms or legs, feed himself, walk or do the many other things he had been doing just a short time ago.

She said that earlier this year Coe “was perfectly fine. He was just a regular, normal toddler up until he was about 18 months old. Then we noticed that he started falling a lot while he was walking, and not like a normal toddler does. All toddlers lose their balance and topple sometimes, but we could tell this was different, that it wasn’t normal,” she said.

Thinking Coe might have an inner-ear issue affecting his equilibrium, Kursten made an appointment with his pediatrician. The doctor listened to her concerns and checked the toddler’s ears. “She said everything looked fine there. So, she said she wanted to put him in physical therapy because she thought maybe he just needed to build up a little extra muscle to help stabilize him,” Kursten said.

Following the doctor’s recommendation, the Hamms began taking Coe to physical therapy in West Plains. Kursten brought him to appointments for a couple weeks, “but it just got worse and worse. His legs started having tremors. I went back to the pediatrician and told her I didn’t think it was normal. She agreed.”

The pediatrician referred the family to a neurologist in St. Louis, and the Hamms explained Coe’s symptoms to the specialist. “He said ‘We don’t want to alarm you, but from what you’re telling us, we think there is probably something wrong with his brain or his spine.’”

A representative from the doctor’s office told them that if they could arrive before 8 a.m. the next morning, they would perform an MRI. Coe underwent the scan at the end of July. “At that point, everything looked great with his brain, but they did see an arachnoid cyst on his spine. They said it created what was almost like a dam, which caused his spinal fluid not to flow like it should and could cause a disconnect between his brain and his legs, which would explain why he wasn’t able to walk correctly,” she said.

Coe was scheduled for surgery to remove the cyst in mid-August. He was expected to spend five days in the hospital and then have a recovery time of one to three months before returning to walking and living as the happy, healthy boy he had always been.

But the next week, instead of improving, Coe rapidly declined. “It got to where he wasn’t able to use his arms anymore; he couldn’t feed himself,” Kursten said.

Desperate for answers, the Hamms made several more trips to St. Louis to meet with doctors and specialists. “We have a good team, but I just felt like we were being told he needs more therapies - physical therapy, speech therapy... I was already going to therapy five days a week. I knew that wasn’t the answer. This is my child. I knew there was something very wrong, and therapy wasn’t going to help,” she said.

After repeated appointments, the neurologist ordered genetic testing to see if a disorder could be causing Coe’s decline. Brad and Kursten were hopeful to finally get answers, but they were told it would take four to six weeks for results.

“So we went back home, and it got awful. It was like he was at a newborn stage. I kept saying ‘I think something is wrong with his brain, and we need to get another MRI.’ They said they would schedule it, but it would be another 6-week wait for that,” she said. “I sat at home for a week and  was going crazy. I just couldn’t sit there anymore and wait. So we drove to St. Louis and took him to the ER and demanded they give him an MRI. They said the insurance company wasn’t wanting to pay for another MRI so soon after the first one, but I told them ‘I do not care. I’m telling you he needs to have one now.’”

After the forceful discussions, the emergency room staff scheduled an MRI. The family stayed in St. Louis overnight and Coe went for the test the next morning. After waiting a short time, Kursten said they met with the doctors.

“They came into the room and said they had to wait for the results of the genetic testing to be sure, but that all signs were consistent with leukodystrophy. There are lots of different types, and they said we had to wait for the results to know more.”

The medical staff contacted the genetic testing company, and due to the circumstances, Coe’s results were expedited. The diagnosis was quickly confirmed. Coe tested positive for the shortened version of MLD, a rare and devastating diagnosis that typically leads to a short life of just two to five years. Only one in approximately 45,000 children are diagnosed with the disorder.

Brad and Kursten were tested and discovered that both are carriers of the gene, something they had not previously known. Kursten had undergone genetic screening while pregnant with Coe, but leukodystrophy is not included in the standard testing panels in Missouri or Arkansas. “If they had tested me, and we knew about it, there is gene therapy they could have done with him before any symptoms developed. If they had done that, he could have lived a long, healthy, normal life,” she said. “So that has been really hard to think about and understand.”

The Hamms are now in the process of having their other two sons tested. “Because both Brad and I are carriers, that means that our other children have a 25 percent chance of having what Coe does. But they have said that it would be rare for them to have it and not have shown symptoms yet.”

Kursten said they have gently discussed the diagnosis with Coe’s brothers, Cord, who is 5, and Colt, who celebrates his 9th birthday this Thursday. She said the boys do not yet know the severity of the situation. “I, as an adult, can hardly handle the weight of the news, and I don’t want my children carrying it around. I ask that if you see them, you don’t mention it to them. They are aware that Baby Coe’s brain works ‘differently’ than ours, but that is the extent of their knowledge. They love their brother and I want them to enjoy life and their time with him in the best way that they can,” she said in a Facebook post to her friends and family. 

Kursten, who owns The Painted Palomino salon and studio in West Plains, says she has temporarily closed the business while she and Brad navigate their next steps. Brad, who works for LNR Industries, a welding and fabrication shop in Cabool, has also taken a leave from work.

Help support the Hamm family

Those who would like to financially support the Hamm family through one of the many fundraisers or benefits being planned, can chose from the following options:

Mail a check directly: Financial donations can be made in the form a check, addressed to Brad and/or Kursten Hamm, and mailed to PO Box 81, Gainesville, Mo. 65655. This option allows the family to retain all of the donated funds without having to pay a portion for a third-party company to host the fundraiser, such as GoFundMe.

GoFundMe account: A GoFundMe account titled “Supporting Coe’s Care: Navigating through MLD Leukodystrophy” is accepting credit or debit card donations through the website. Visit GoFundMe.com and search for the name above. This is a convenient way to donate using a debit or credit card, but it’s worth noting that a small portion of the donation does go to the website hosting company. 

Raffle for 50 pounds of ground beef: Jim and Lydia Donley, owners of J-L Cattle Co in Gainesville, are hosting a raffle for 50 pounds of farm-fresh ground beef, with 100 percent of proceeds benefitting the Hamms. Tickets are $20. Delivery is available in Gainesville, West Plains and Mountain Home. Payments can be sent via Venmo (@lyddonley, last four 7329) or PayPal (lyddonley@hotmail.com). The drawing is Friday, Nov. 21. For more information, call 417-372-7329 or visit J-L Cattle Co on Facebook.

The Hair Shop’s raffle of local businesses’ donated items: Mischa Kastning of The Hair Shop and Tanning in Gainesville is hosting a raffle featuring multiple prizes donated from local businesses followed by a grand prize, a money wreath filled with gift cards, gift certificates and cash. Some of the drawing items that will be given away before the grand prize include a 2-night stay at Captain Ron’s cabin at Rockbridge Rainbow Trout and Game Ranch (a $1,400 value), a National Lampoon’s Christmas Vacation hockey jersey with the name “Griswold” on the back and autographed by Chevy Chase, a gift card for a deer shoulder mount from Jarod’s Taxidermy, a drill, linked permanent jewelry ($100 value), a 6-month membership to Top Dog Fitness Center, two 1-year subscriptions to the Ozark County Times, gift cards to Radiance by SJ, Buckstitch Embroidery and Screenprinting and massage by Krista Crisp, gift baskets and gift cards. Tickets are $20 each, and the drawings will be held Dec. 12. Tickets are available at Deb’s Bakery and Diner, American Family Insurance, Molly’s Salon, The Hair Shop and Shelter Insurance, all on the Gainesville square. For more information, call Mischa at 303-383-2382.

Tip collection: All tips given at J’s Grill food truck in Gainesville will be donated to Brad and Kursten.

Donations: Financial donations can be made at the Take 5 bar, located off Highway 5 south at the state line.

Raffle for lawn care services: Elite Lawn Care of North Central Arkansas is raffling off a $250 credit toward lawn care services.

Benefit auction and bake sale on Dec. 5: The Farmer’s Tan salon in West Plains is hosting an event titled “A Little Sugar, A Lot of Love,” featuring a bake sale and silent auction. Auction items donated items so far include a signed, authentic Taylor Swift CD, a Yeti Hopper Flip 8 cooler, a Ninja Frost Vault 50-quart cooler, a photography media day with Karla Smith Photography, a $50 gift card to Radiance by SJ in Gainesville, a full photo session with Gray Photography, a 250-pound butcher hog from the Smith family, a three-hour rental at Pine Meadows Venue in Willow Springs and more. There are also several baked goods including Melinda Abraham’s cinnamon rolls and fried pies by Christina Jones. To view items, search for the Facebook event “A Little Sugar, A Lot of Love.” Bids can be submitted in the comments or in person at the event, scheduled for 2 to 6 p.m. Friday, Dec. 5, at the Farmer’s Tan Salon, 1505 Imperial Center in West Plains. For more information, call 417-712-4676.

Raffle for Photography session: Adrian Lawing, owner of Adrian Photography in West Plains, is currently hosting a raffle for a 1-hour family photography session with full gallery ($500 value). Tickets are $10 each, and there are unlimited spots. Purchase a ticket by Cashapp ($adrianlawing) or Venmo (@adrianlawing, last 4 of phone number 5176). 

Raffle for a professional 4-layer cake: Semi Sweet and Treats is hosting a raffle for a 4-layer cake order, which can be utilized at any time (with availability) with no expiration date (valued at $125-plus). It is $10 a ticket, which can be purchased through Venmo (@courtney-wilbanks27, last 4 7888). For more information, visit the Semi Sweet and Treats on Facebook.