She’s lived with the knowledge of this horrible disease for over three decades. Her odds are 50-50. She keeps moving forward, but she can’t shake it. It’s always there. It’s heavy. It’s scary. She can’t change her genetics, but she can create change because there is always hope.
Lynn Kotrba was in the fourth grade in East Grand Forks when her mom was diagnosed.
“I have a couple of memories of my mom before she was sick, but most of my memories are of her sick,” Kotrba shares.
Lynn’s mom, Margaret, was diagnosed with Huntington's disease, which is a progressive brain disorder.
“The way I describe it, Huntington's is similar to Parkinson's, Alzheimer's, and MS all in one,” Kotrba explains. “It's just bad, all around.”
Huntington’s is caused by a single defective gene. This defect is inherited from a parent with Huntington's and because the defect is “dominate” anyone with the defective gene will eventually develop the disease. Symptoms of Huntington’s typically present themselves in a person’s 30s or 40s, and there is no cure.
Margaret was 40 when her symptoms began. The youngest of six, Lynn and her sister, who was seven years older, were the only kids still at home. Her dad was the chief of police and as Margaret’s symptoms progressed, he struggled with deciding how to care for his wife and provide for his family. He turned to the family’s priest for guidance.
“He called Father Jerry, told him he didn’t know what to do, but thought he would have to take my sister out of school so she could take care of our mom,” Lynn says. “Father Jerry said, ‘no, you're not going to do that, we'll figure something out.’”
A short time after that, Jerry called to let the family know there was a nun who was going to come and take care of Margaret.
“We lived about six blocks from school, and Sister Imelda lived at the convent, and she would walk over every day, get there at seven in the morning, and then we would go to school and work, and she would stay, take care of mom, make supper, and take care of everything. Then she'd walk home at the end of the day, and never let my dad give her a ride. She always wanted to walk. Even when it was below zero, she wanted to walk,” Kotrba remembered with a smile. “She was an angel in our lives.”
Sister Imelda would make the six-block trip each day for three years until Margaret entered a nursing home in Crookston, Minnesota.
Sister Imelda then moved to the convent in Crookston and would visit Margaret each day in the nursing home until Margaret’s death six months later. Kotrba was in eighth grade. She was 13 and now lived with the fact that she and her siblings could be living with the same disease that has no cure.
Making a difference
“After my mom died, I very much wanted to become a doctor and cure Huntington's,” she remembers.
In her junior year of high school, she entered a program where students could shadow medical professionals at the local hospital and see if the medical field as a career fit. Lynn quickly realized it wasn’t for her, and like every young person her age she was trying to find her place, but she was also dealing with the reality that Huntington’s disease could be an inevitable part of her life.
“There were times while I was in high school where I don't really think I suffered from depression or had mental health issues, but I looked at what my dad had gone through and though I don't ever want to put a husband through what my dad went through,” she shares. “There were times when I thought if I find out I have Huntington's I would either kill myself or become a nun. Totally the wrong reason to become a nun, but I just did not want anyone to go through what we had watched my dad go through. For so many years, just taking care of my mom and what it did to him. But then I met Jason and that went out the window!”
“I tried to date her in seventh grade, but she didn't want anything to do with a seventh-grader,” her husband Jason says with a laugh. “Her confidence and the fact that she was beautiful, and still is, is what made me fall in love with her. By February of her senior year and my junior year rolled around I just knew she was the right one for me.”
Huntington’s disease would make another ugly appearance in Lynn’s family with the diagnosis and death of her oldest sister Lisa.
“After my mom died, it was like Huntington’s was this big white elephant in the room that everyone ignored, and no one wanted to talk about, and then my sister got sick," shes says. "It was hard for us, but we always knew that we were all at risk.”
Kotrba, two of her brothers and other sister have not been tested for Huntington’s.
“One brother has been tested and he does not have it,” she says. “My mom and sister were both diagnosed around the age of 40. Normally Huntington’s shows up between 35 and 45. It can show up later. It can show up earlier. But normally it's between 35 and 45."
She's 44 now.
"I hate my birthday," she says.
Years ago, she confessed to her husband she didn't want to do anything for her birthday until she reaches the age of 50.
“It's just this number in my head that, if I'm going to have it, I'm going to know between 35 and 45. That's just always the way I've thought. It's kind of silly," Kotrba says. "But when you watch your mom and sister go through such a horrific disease and they both died when they were 49, it’s hard to celebrate getting older and potentially closer to a diagnosis.”
Even while being at risk, Lynn has chosen to keep moving forward in her life. She and Jason have been married 22 years and have seven kids, Autumn (15), Hannah (13), Shawn (11), Joe (10), Olivia (9), Ella (7), and Ava (5). Jason has been principal at Holy Spirit Elementary school in Fargo for 17 years and Lynn has been with Lutheran Social Services in Minnesota as a foster care counselor for nearly 20 years.
“I think people who are at-risk for Huntington's, for some, it's the end of the world to them. They're angry, and they don't like their life, and they don't want anyone to know or they're keeping a secret, or they're not doing what they really want to do in life because ‘what if I really do have Huntington's?’ They're holding back from who they really could be, just always waiting for the shoe to fall,” she says. “I just think, you can't do that. And there were times when Jason and I thought, should we have kids? Because what if I do have Huntington's? Well, now I think, what if we would have made that decision? These seven blessings that wouldn't be here? And then I think, how are they going to bless the world?”
More than a home
In January 2015 the Kotrba family of nine were looking to either move or expand their existing home, when they found a north Moorhead farm that immediately felt like their forever home. After a different offer was initially accepted, Lynn and Jason decided they would stay in their existing home. Five months later their realtor called to let them know the farm was available again. June 15, 2015, they closed on their farm. The following Sunday the family enjoyed a grill-out at their new home. “Jason said to me, there's a reason God wanted us to have this place, we have to figure out how to bless others,” Lynn recalls. She felt it too, but how?
“We both kept thinking about it. What can we do? Since we got married, we’ve always wanted to do some sort of camp to help people, but we didn't know what kind of camp. Then in 2017, I started having these visions of sheep and kids in our forest. I know it sounds crazy,” Lynn says with a smile. “At first I didn't say anything to Jason or anyone.” But they were vivid. Finally, she confided in Jason.
“See what happens when you open your eyes and ears and you listen to God?” her husband responded. “God has been speaking to you and you haven't been listening and now you are.”
“At first I was kind of mad,” Lynn admits. “I've been going to Catholic school all my life and you're telling me this right now that I’m not listening? But Jason has had visions like that for years and I've always told him I wish I could hear God like he does.” Was she hearing Him now?
She kept having these visions. Sheep and lots of kids, more than just their kids and a road in their forest. What about a farm camp? They could teach kids about the outdoors, where their food comes from and they can pay it forward by donating the produce grown, and maybe they could get some more animals besides the chickens they already had. Was that a good idea?
Lynn decided to bounce the idea off her friend Dr. Kim Vonnahme, a doctor of animal science at NDSU. “I got goose-bumps when she said how they wanted to use their farm to give back to the community,” Kim remembers. And she wanted to be a part of it. “As an Iowa farm girl, and being a scientist in the area of agriculture, I was so excited to share my joy and knowledge of agriculture with young children! How could I not want to jump on board?”
Jason and Lynn continued brainstorming their farm camp and establishing a non-profit. Then Lynn’s niece sent her a story about a Mankato, Minnesota family that were raising sheep that could be used in Huntington’s disease research. The story lead Lynn to Shepherd's Gift: GM1 for HD in South Dakota, whose mission is to promote a treatment for Huntington's disease and other neurological diseases and disorders using sheep.
GM1 is a naturally occurring molecule found in all mammals but is deficient in Huntington’s, Parkinson's and Alzheimer's patients. GM1 research has shown great promise in animal models to reverse the devastating symptoms of Huntington’s disease. Lynn immediately got in contact with Shepherd’s Gift but was told they weren’t looking to set up any new farms.
“Well, I'm kind of persistent,” Lynn says with a smile. “So I kept bugging them. Every week or two I would email and I sent them my full family history of Huntington's.”
It worked. Lynn got a call back that the organization had reconsidered and they would give the Kotrba’s ten sheep to get their flock started and they could be involved in their research.
Things continued to fall into place. The framework of their farm camp was done. Their sheep were coming, a friend and attorney by trade, helped Lynn fill out all the sea of paperwork to create their non-profit. Janelle Gergen, a childhood friend stepped up to offer logo and website design, marketing and PR help, another friend lent her gift of photography.
Harvest Hope Farm was a reality, just six-months after Lynn’s first vision.
“God has just sent all these people to us,” Lynn says. “It's just amazing. Everyone's done everything pro bono for us. We haven't even asked. We just expected to pay for stuff and people said no, we'll just do it pro bono.”
Jason agrees. “God keeps opening doors for us. We are blessed and thank everyone for their support of Harvest Hope Farm. To whom much is given, much is required!”
Growing the flock
While the Kotrba’s had no idea how to care for sheep or how to lamb, Lynn wanted the chance to impact Huntington’s disease. “We were like the blind leading the blind, we had no clue,” Lynn confesses with a laugh.
Ten pregnant sheep came to the Kotrba’s farm April 2018. They didn’t carry the GM1 gene, but the ram they were bred with did. So, some of the lambs born would carry that gene. “The lambs that carry this GM1 gene, overproduce a glyco-sugar that people with Huntington's Disease are deficient in,” Lynn explains. “If the lamb gets the positive gene from dad and from mom, then they're able to be used for research.”
The Kotrba’s keep only the gene-positive females because they are breeding the gene in. From their initial flock, six females were positive and will be bred this fall with a gene-positive ram. The lambs then born with the positive gene from this breeding are then bought by the research team in South Dakota where they are harvested and their liver is used to make the medication used in the research.
Research is in the third of five mouse trials. “Everything is going the way it should go,” Lynn says. After the mouse trials, human trials should begin.
“I just feel so much more hope,” Lynn says of having their sheep herd. “I feared Huntington's, every day. But now that we are actually a part of the cure, I can feel that hope in me. And the kids do too. We were eating supper one day and one of the kids said, ‘you know what mom if you got Huntington's disease your cure is right here in our backyard.’ Yeah, it is!”
A ripple effect
“All of this with Harvest Hope Farm has been so good for all of us,” Lynn says. “For me, for Jason, for the kids, just to be able to take this negative thing in my life that was so very negative and to turn it into a positive, an impact, and help others is amazing.”
Harvest Hope Farm runs completely on donations. They will be hosting their annual fundraiser on September 8th, but donations are accepted year-round. You can also sponsor a sheep for $300 per year.
“I admire that Lynn is compassionate, hard-working and a dreamer,” Janelle says. “She is not afraid to love big and express her pursuits of all things great and glorious!”
Kim agrees. “Lynn is the most selfless person I know—I am always in awe about how she happily takes things on to help out her community. She always approaches you with a smile and a friendly hello! She opens her heart and her home whenever it is needed. We are blessed to have her in our community!”
The second annual farm camp is nearing completion. Fourteen “city kids,” ages 6-13, have been getting their hands dirty each week, tending their gardens and animals, and learning lessons of the farm and more. “The growth we've seen in so many of them is amazing. We have a couple of girls who, initially, were scared to do stuff and now they're right in there. Their confidence is just growing.” And Lynn is quick to graciously acknowledge Harvest Hope Farm is where it is because of numerous volunteers and its board of directors.
“Harvest Hope Farm is about so much more than the Kotrba family,” Lynn says. “It is about a group of people who said yes to a calling. A group of people, who are all active in their own lives, with their own families and careers, a group of people who believed in the mission of bringing hope to others through Harvest Hope Farm.”
A calling of hope
When Lynn’s son Shawn was baptized, Sister Imelda brought him a stuffed lamb, which he has loved through his childhood. “I had said to Jason just think of that. Sister gave this to Shawn after caring for my mom, and now we have sheep that will potentially cure Huntington's disease. Coincidence? I don't know.”
Looking back, Lynn sees many blessings in all she has experienced. What would she tell that young girl that lost her mom and sister to such a horrible disease? “Don't Give Up. Step Up. Change the world one person at a time. Be kind. Be you. Know your why and don't let other people change it. Enjoy every moment. Don't live for the what if's. Doing the right thing, is always the right thing, no matter how exhausted it may make you. Live your best life always. No matter how bad things may seem, they can get better and you will always have people there to support you. Say I love you and mean it.”
And looking forward? “In the next 5-10 years Harvest Hope Farm will be nationally impacting the cure for Huntington’s disease,” Jason proudly says. “Our farm camp will also be giving kids an opportunity to learn and give to others through the growth of food. The sheep heard will be one of the region’s largest.”
Jason’s answer doesn’t surprise Lynn. “He is just the eternal optimist, and ever faithful, and totally, 100% supportive of everything.” Lynn also hopes to be working full-time with Harvest Hope Farm.
“I found my reason. I have found my purpose in life now that we're doing this,” Lynn says with a smile. “Before I had a purpose of being a mom, and doing what I do for my job, but something was always missing. I just kind of always felt like there was something more for me to be doing than what I was doing.
Janelle can only look at her friend Lynn and Harvest Hope Farm with awe. “A woman whose life and family has been profoundly altered by a horrid disease wakes up each day and humbly chooses to embrace hope over fear. Even amidst heartache and struggle, there are ways and reasons to look beyond our own sufferings to make a difference in this life so that others' burdens can be lessened.”
“Now, I'm 100% fulfilled,” Lynn says with a soft smile.
To learn more about Harvest Hope Farm visit harvesthopefarm.org.
Editor’s note: Story was written by Sheri Kleinsasser Stockmoe and originally published in the August/September 2019 issue of the On The Minds of Moms magazine. Forum Communications Company is re-publishing these stories as On the Minds of Moms staff members develop a new online community.