Crestview Woman Fights Uphill Battle Against Sickle Cell In Florida

Allison Morris, a caregiver to her daughter Samariah, who battles Sickle Cell disease, founded the non-profit "We Reign" to advocate for resources, awareness, and support. Samariah, a vibrant dancer, faces regular pain crises exacerbated by limited local infrastructure. The organization aims to educate, fund research, and assist caregivers in managing the challenges of the disease.

In Brief:

Allison Morris founded “We Reign” to support her daughter Samariah and others battling Sickle Cell disease, aiming to raise awareness, funds, and resources.

Sickle Cell disease disproportionately affects African Americans, leading to healthcare disparities and stigma, requiring community-driven efforts for support and education.

Through advocacy, fundraising, and community engagement, “We Reign” seeks to alleviate the burdens faced by Sickle Cell patients and their caregivers, fostering hope for improved treatments and ultimately a cure.

Allison Morris’ daughter, Samariah, is a bit of a ham. “She loves to laugh,” her mother said with a smile on her face. She has a very bright sense of humor. She’s a dancer; she’s expressive in that regard.”

 

But Samariah also has regular pain crises that result from her Sickle Cell disease. In her eight years, she’s been to the emergency department in Pensacola more than 30 times.

 

Morris serves as the caregiver to Samariah, who is forced to weather the intense pain that comes with her condition for extended periods because she lives in Crestview – which does not have the necessary infrastructure to help her. 

 

When she does make it to the one hospital in the area that has the resources to help her – it can take up to five hours for her to be seen – despite the severe pain the disease gives its carrier.

 

“If you’re having a heart attack, it doesn’t make sense for you to wait an hour you know, just to get to the emergency room to be treated for it,” Morris said, “[it’s] the same level of severity with what [ heart attack patients] have to go through.

 

But the disease has those heart-attack-like symptoms regularly. These crises happen sometimes as much as once per month, something Morris knows about firsthand, thanks to nine months in 2023. 

 

At the end of that exhausting year, Morris started a non-profit foundation to advocate for additional resources and heightened disease awareness among patients, caregivers, and medical professionals. 

 

Morris had three goals in mind when she started “We Reign,” the non-profit named after her daughter’s middle name. First, she wanted to raise the knowledge baseline about the disease in the Florida Panhandle so that medical professionals and caretakers were more prepared to deal with the disease. Second, Morris wanted to help raise money for research to achieve a cure for the disease. Finally, she wanted to create a fund to help people cover costs associated with the disease and the caretakers who help manage it, as well as more daily assistance – like raising awareness about the disease so stakeholders can work better to manage it. 

 

What Is Sickle Cell?

Sickle cell was the first molecular disease to be discovered when a Chicago doctor published a medical paper about a blood sample that showed “sickle and crescent-shaped” red blood cells for a 20-year-old student from Grenadawho was severely anemic and experiencing pain episodes,” according to the American Red Cross. 

 

The disease came from a genetic mutation that resides primarily in people of African descent. The reason for the mutation is that it made it harder for Malaria germs to attack people’s blood.  

 

Sickle Cell Anemia, the technical name for the disease, causes severe pain and serious complications like infection, acute chest syndrome and stroke. People with the disease can expect to live about 40 years – though some people have been cured with a bone marrow transplant. About 2.5 million people in the United States alone have sickle cell trait.

 

The CDC reports that about 73.1 African American babies out of every 1,000 born have the trait. While the numbers are lower for other races, both white babies (three for every one thousand) and Asian Pacific Islander Babies (2.2 per every one thousand) can also carry the trait. “It’s something that can genetically affect anyone,” Morris noted.”

 

Getting Patients Access – And People to Care

While many people around the country have the trait, far fewer have the disease: about 100,000, according to the Centers for Disease Control. 

 

Morris says that less than 300 people in the Northwestern Panhandle Area of Florida have the disease, which means that resources are scarce – especially in less populated areas. She adds that the 100,000 number is an educated guess by the Centers for Disease Control – as there is no national registry. 

 

When they get to the hospital – she says many medical professionals they rely on for care have not encountered the disease regularly, which leads to more stressful situations for her and her daughter, including the stigma that she and her daughter are drug seekers. In many cases, Morris says, the only way to deal with an extreme pain episode is to use opiates to numb the pain. “because of racial disparities and things like that – there’s a myth or a taboo saying that, ‘sickle cell patients are drug seekers and they’re not actually [in pain],” Morris said, “There’s a lot of stigma that people get when they are around you or other people with sickle cell, they don’t understand. And we want to make sure that they understand that this is an invisible illness, but we’re still hurting. The caregivers are having to manage they best they can. That’s it in a nutshell – we want more understanding and funding.”

 

Morris hopes that the more awareness she can spread about the disease, the more medical professionals will educate themselves on the disease and how they can help those who suffer from it. 

 

“I realized in my own daughter’s care that things weren’t told to us until after the fact. [information provision] was more reactive. But if I knew ahead of time, ‘okay, this is what we need to look for [issues]. These are the treatments available,’ We could have probably gotten her on a better regimen earlier,” Morris said. 

 

Fundraising

The charity also works in the community to raise money to end the disease – or at least reduce its devastating effects. It partners with other non-profits to promote their causes together, meaning more exposure to the community at large – something needed desperately in an area where Sickle Cell disease, an already rarer illness, affects fewer people than the national average. “It’s a disease that primarily affects African Americans. I feel like there is a need for others that don’t have sickle cell to be involved,” she added, “You need others [outside of those immediately affected by sickle cell] when you are dealing with a disability. So, we just need more support from the community, that’s all. Even if they will come and volunteer at one of our events or just be more understanding.”

 

According to the Census Bureau, Okaloosa County (10.6%) has a smaller proportion of African Americans than the country as a whole (13.6%) – an especially interesting number, considering the American South has the highest proportion of African Americans of any region. The Pew Research Center notes that more than 40% of African Americans live in The South. 

 

The group plans to do a fundraiser on June 19, World Sickle Cell Day. You can find out more about on their website – Wereignscc.com

 

 

Second and Third Order Affects 

Like with most diseases – it affects the family in more ways than one. 

For people in northwest Florida who are caregivers for people with sickle cell anemia, that often takes the form of costs. For many people who take care of others with sickle cell – the financial costs are significant, as is the knowledge curve to find out what kind of assistance is available and where to apply for it. 

 

She hopes to provide rent assistance for people who need to miss work to deal with the effects of the disease on their charges, as well as gas money to go from places like Niceville or Crestview all the way to Pensacola or Tallahassee. “We want to provide some type of relief for people that are missing work because they’re in the hospital or because their child is having issues and they have to stay home with them.”

The Future – and a Cure 

Morris and We Reign have a long and challenging trek ahead of them if they want to increase awareness, raise funds and make a difference for the people who live with sickle cell anemia or carry the trait and could pass it on to others. 

 

Some promising trials have come out of labs in the last couple of years. “They are working on gene therapies,” she said of the research, “So there’s hope that there can be a cure in the near future.” In addition to treatments coming down the pipeline – there are four FDA-approved drugs on the market now for helping lessen the effects of the disease. However, as the education about the disease and treatments and patients’ need to catch up and begin to work together to improve medical outcomes spin up, there is still much to be done. While they wait for the sinews of freedom from this disease to work together to cure it, Morris adds, “We want to fill that gap as a community-based organization to give the knowledge that is needed about different diseases and how to treat it and how to manage it better at home.”

 

Morris hopes she can give her daughter less time to deal with the effects of sickle cell and more time to dance on the stage. “She loves to dance; that’s her thing. She’s just a typical eight-year-oldbut she is wise beyond her years. Because she did, she is very much aware of her condition. She very much knows.”

Download our app to stay in the know about niceville

Support local news. get cool stuff.

We’ve never needed local news more than we have today. With newspapers going out of business and fewer reporters around to watchdog local government, cover events or sports, and make sure you know what’s going on in your community

 

Donate today to keep local, independent and accountable journalism in your community today

 

Plus, we’ll give you some cool swag when you make your donation monthly

Keep Up With Niceville News

Stop scrolling social media to find out what’s going on in Niceville. Sign up for our weekly newsletter for the info impacting your daily life!

Boat on a Bayou