Quincy Grittmann has faith. Her faith, however, goes far beyond the ordinary definition as a religious belief. Hers is an explosion of surrender that she has pulled fiercely to her heart with both hands. To hear her describe her trust in the Creator is to be deeply humbled by the courage of this young mother.
“I have put my child’s life in the Creator’s hands and I know that no matter what happens it is going to be OK,” she said.
Grittmann of the Meskwaki and Ho Chunk tribes, is confident that her boundless faith and support of her Native family and community will sustain her as she embarks on the uncertain odyssey of a lifetime. On April 1, she and her little family are moving from the familiar in Tama, Iowa to the unknown in Colorado Springs, Colorado. She and her husband Brandon are moving to Colorado with their 3-year-old son, Braedy, so that Braedy can receive medical marijuana for the grand mal seizures he has had since he was 3 months old.
Braedy Grittmann, 3, has suffered from grand mal seizures since he was 3 months old.
The decision to move from their close-knit community on the Meskwaki Settlement near the little town of Tama has not been made lightly. But after extensive research into the benefits of medical marijuana coupled with months in the hospital and watching her son suffer from the side effects and limited success of powerful drugs, she has decided the only option is to move to Colorado. Like many other families, desperate for relief for ill relatives, they are moving to a state where medical marijuana is legal. The drug is illegal in Iowa.
The Colorado based nonprofit organization Realm of Caring, famously champions use of a strain of marijuana called Charlotte’s Web to control seizures; it is given in the form of oil and is not smoked. The drug is named after a five-year-old girl with intractable epilepsy, Charlotte Figi, whose seizures were controlled by use of the oil. The Charlotte’s Web strain is high in cannabinoids or CBD, and low in THC that produces the “high” associated with recreational use of marijuana. CBD is thought to have anti-inflammatory, neuro-protective and anti-seizure benefits.
Braedy’s story is similar to that of Charlotte who also inexplicably began having numerous uncontrollable grand mal seizures at 3 months of age. Like the Grittmanns, the Figis soon ran out of options, reported CNN.
After years of using powerful medications and multiple hospitalizations, doctors told Charlotte’s parents there was nothing more that could be done. The little girl was having 300 grand mal seizures per week and in the hospital most of the time; the Figis signed a do-not-resuscitate order for their five-year-old child and said their goodbyes. Doctors even suggested putting her in a medically induced coma to give her little body a rest. In desperation, Charlotte’s parents began learning about the benefits of medical marijuana, especially CBD. Her mother Paige finally found a small amount of a strain with low THC and high CBD for $800. After getting a friend to extract the CBD into oil and having it safety tested at a lab, she gave it to Charlotte. Paige describes her family as pioneers. She confesses to being terrified at using Charlotte as a guinea pig but the results were stunning. Charlotte’s seizures stopped for seven days.
The family was eventually able to convince the Stanley brothers, one of Colorado’s largest growers of medical marijuana, to allow Charlotte to use a similar strain that they had bred. Although initially very reluctant, the brothers finally agreed to provide Charlotte with cannabis oil.
"The biggest misconception about treating a child like little Charlotte is most people think that we're getting her high, most people think she's getting stoned,” Josh Stanley said, stressing his plants’ low THC levels. “Charlotte is the most precious little girl in the world to me. I will do anything for her.”
After witnessing Charlotte’s remarkable recovery, the brothers created the Realm of Caring Foundation and are being called the Robin Hoods of marijuana, according to the CNN story. The brothers say that helping people who need medical marijuana is their calling.
Charlotte, now 7, gets a dose of cannabis oil twice daily in her food and is thriving; her seizures have been reduced to two to three times per month and mostly happen in her sleep.
After learning about the Figi family and others who have benefitted from using the cannabis oil, Quincy was encouraged to do more research. She soon learned about the findings of Dr. Sanjay Gupta, a practicing neurosurgeon and CNN’s chief medical correspondent. Gupta describes the cannabis plant as a genuine medicine, far more than a means to get high. According to Gupta, science is emerging that shows what marijuana can do for mechanisms of the brain.
He created a documentary for CNN entitled “WEED” in which he travels the world investigating marijuana.
To date, however, there has been no long-term clinically based research on these claims. Despite this uncertainty, more than 111,000 Colorado residents hold medical marijuana registry cards as of this year and 215 of these patients are under age 18, according to the Colorado Department of Public Health and Environment as reported by the Cedar Rapids Gazette.
According to a recent story by CNN, more than 100 families have relocated to Colorado seeking medical marijuana for their sick children.
For the Grittmanns, it all began on March 19, 2010. Quincy was lying in bed with 3-month-old Braedy when he suddenly started having seizures that wouldn’t stop. After calling 911, she and Braedy were life-flighted to a hospital where the boy remained for three months as doctors struggled to get the grand mal seizures under control.
“His entire body will convulse and shake. Sometimes he stops breathing and turns blue and we have to give him oxygen. Even now, we never know if any given seizure will be the one that kills him,” she reported.
Children with this type of seizure disorder seldom live to adulthood, according to Quincy. Doctors’ initial prognosis for Braedy indicated he might die within six months. Although he has reached the age of 3 years, the prognosis is essentially the same. “When your child has an expiration date, things change. You do what you have to do for them,” she said.
“Life has been a roller coaster ride. Today he might have zero seizures, tomorrow he might have 10,” according to Quincy.
Today Braedy is hypotonic, lacking muscle tone, and must use a wheel chair. He only recently began to eat baby food after months on a feeding tube to his stomach. Although Braedy can’t speak, he has begun to smile and hold his head up. All his advancements, however, typically get swept away when the seizures begin. “When the seizures come, he gets knocked back to square one. He regresses and has to learn to smile all over again,” she says.
When the smiles do come, however, they are “magical” according to Quincy.
Quincy thought she had faith when Braedy first entered the hospital. “I soon found out how strong my faith wasn’t,” she recalls.
Quincy calls Braedy's smiles "magical".
Watching her baby literally deteriorate before her eyes nearly drove her to suicide.
“I had always thought I had a strong mind, but I sank into a deep depression. I didn’t want to be here anymore and watch his little body get pummeled by the seizures. In a way, he was already gone for me, and I didn’t want to be here for his last breath; I wanted to leave,” she said.
But her family, community and tribal elders came to her rescue. “They reminded me that the Creator doesn’t do things in order to hurt you. Maybe this is supposed to happen, and if it’s time for Braedy to go, I have to trust that the Creator knows what’s right,” Quincy said.
“Fear and worry can get the best of you, but you can’t live like that; it will drive you to the loony bin; it will make you sick. My faith gets me through every single day,” she states.
She owes much of her strength to the Meskwaki community. “The community support has been incredible; I swear I couldn’t do this without them,” she notes.
The Meskwaki Settlement is an unincorporated community of about 1,300 tribal members on 8,000 acres in Tama County in rural central Iowa. Although the tribe is federally recognized, the tribe owns the Settlement, unlike a reservation. Brief research in to the Settlement’s history speaks to the community’s abiding love for place and family, of a people who resisted removal from their homelands and succeeded in maintaining a presence in the land of their ancestors.
Members of the community have organized fundraisers for the family and visit often when Braedy is in the hospital. Quincy had to quit work and now stays home with Braedy full-time.
“When we are out with Braedy in the community, nobody walks by without saying hello to him and talking to him. Although he is in a wheel chair and non-verbal, people talk with him as though he is speaking to them,” she says.
For Quincy, it’s as if they share her mother’s heartbreak for Braedy.
“They hold me up when I fall. I don’t know what I’ll do when we move to Colorado. I’ll walk into a store and I won’t know a single person,” she laments.
The Grittmanns have always lived on or near the little settlement, sheltered by family, extended family and the many aunties and uncles who typically inhabit the Native sense of community.
Quincy wonders how she will be able to leave her home and especially worries about leaving her aging grandparents, who raised her. Lois and Curtis (Buddy) Davenport are in their 90s and currently live a few miles from her home.
“I’ve always gone to see them, sat with them, laughing and talking. When I cry now, it’s mostly about losing them,” she notes.
Unlike the rest of her family, Lois and Buddy won’t be able to make the 12-hour drive to visit them in Colorado Springs. “I’m scared I’ll get that fateful call while we’re in Colorado Springs that they’ve gone,” she said.
Quincy marvels at the well of support she has received from family and the community. Her cousin Syreeta Savage moved to Colorado Springs last month with her family in order to be there for the Grittmanns.
“Who does that!?” laughs Quincy.
Savage wouldn’t have it any other way. She and her family were already considering moving away from the Settlement in order to give her three young daughters the experience of living in the bigger world.
“We are sisters in the Native way. I had to wear her hand-me-downs,” Savage laughs.
Such an effort is simply something that folks at the Settlement do for each other, according to Savage.
“We’re strong-willed. We try until it gets done,” she said.
Braedy in his stroller
The Grittmanns will stay with the Savage family until Brandon gets a job, and then they find a place of their own. They have created a Facebook page about Braedy to keep everyone informed of his progress. Visit facebook.com/quincy.greencrow.
Currently they are at the remaining days of an online fundraiser to raise funds for the move to Colorado and the expected lapse in employment for Brandon. The fundraiser ends April 1. Visit giveforward.com/fundraiser/xh04/braedy-grittmanns-epilepsy-fund to donate.
Quincy hopes to find a community of Native people in her new home. “My husband is non-Native, but I find my strength and comfort from being among other Native people,” she said.
In the meantime, prayer and ceremony from both her Meskwaki and Ho-Chunk relatives sustain her.
Although the use of marijuana is mostly taboo in Native culture, Quincy stresses the medical use of the plant.
“The cannabis oil is naturally sourced and I’ve not read that it has harmed any of the patients who have tried it to control seizures,” said Quincy.
This is more than can be said for the host of man-made legal pharmaceuticals that doctors have prescribed for Braedy, Quincy opined as she noted the many negative side effects associated with such drugs.
In fact, a ketogenic diet has had far better results than drugs in reducing Braedy’s seizures. The diet is high fat, adequate protein and low carbohydrate.
“Medical marijuana is natural; despite being a worry-wort mother, I have a strong feeling that this will help him,” she notes.
She reports that her Ho-Chunk grandma supports using marijuana for Braedy, comparing it to other plant medicines used by Native peoples for centuries.
“I told her that other elders have told me that this was one our sacred medicines,” said Betty GreenCrow.
Although she doesn’t know specifics about each tribe’s traditional use of marijuana GreenCrow noted that it is literally one of thousands of plants that tribes may use for medicinal purposes. Unfortunately, she opined, some like marijuana or peyote are cast in only the negative light, associated with their abuse by mainstream society.
Quincy hugs Braedy, 3.
“This is why we seldom discuss these things,” she said.
GreenCrow describes her granddaughter as a hero whose journey may have a purpose far greater than the needs of her son.
“She is bringing so much awareness and education to the world about the uses of medical marijuana. That information is important for us and for lawmakers,” GreenCrow said.
“Ten years ago, I wouldn’t have given a second thought to the idea that marijuana could help people,” she added.
“We are all pulling for her and her husband,” she added.
The Grittmanns have already met Colorado’s requirements for dispensing medical marijuana and are on the list to receive it for Braedy once they establish residency there. Unfortunately, their health insurance won’t cover the costs of the drug; they won’t know the price until doctors determine dosage required for Braedy’s weight, according to Quincy.
Quincy reports that Dr. Katherine Nickels, Braedy’s current neurologist at the Mayo Clinic in Rochester, Minnesota, supports their decision to try medical marijuana. Dr. Nickels declined to comment when contacted for this story.
Overall, Quincy is working to remain positive as she prepares for the move. “I am trying to make this an experience where I learn things and remain thankful for the moment in which I’m living. It makes it easier to know that something good will come of all this,” she concluded.