Sickle Cell Caregivers Discuss the Joys and Challenges of Raising Children With the Hereditary Blood Disorder
Battling sickle cell disease is challenging and difficult for many reasons and sickle cell warriors know this firsthand, but so do the people who care for them and love them.
Caring for a warrior, whether as a child or as adult family members can be demanding, exacting a physical and emotional toll. It can impact relationships and affect family dynamics, but it’s also extremely rewarding.
The Sickle Cell Foundation of Georgia’s CEO Tabatha McGee takes a look at perspectives and strategies for family members caring for sickle cell warriors, emphasizing the importance of caregiver support and the overall well-being of both the caregiver and the patient in the foundation’s new TV series “Unveiling Sickle Cell: Beyond the Pain.”
McGee points out that at some time in a person’s life, they’re likely to be a caregiver.
“You might be a parent caring for your children, an adult caring for your aging parents, or simply a friend watching over a friend,” she explained.
“Caregiving is something almost all of us have in common, but for those with sickle cell warriors in their lives, it can sometimes require extra effort to help them live well. It can take a lot out of you to watch your loved one going through a crisis but can also fill you with joy to see them thriving.”
McGee talked with two experts on their experiences with raising children with sickle cell disease (SCD).
Mapillar Dahn is the founder and CEO of MTS Foundation, which stands for My Three Sicklers. She was inspired to start the foundation because all three of her daughters are battling the illness.
“I feel so blessed to have my children. All things considered, of course, we go through our ups and downs. Their laughter, they’re so beautiful, so vibrant. When we are not dealing with sickle cell, we do our best to live life to the fullest,” Dahn stated.
Lisa Touray is the founder and creator of Atlanta SCAR, Sickle Cell Awareness Rise, to increase knowledge about the inherited blood disorder. Her son is a patient, also known as a sickle cell warrior.
“My joys of being a caregiver are being able to lighten the load, not just for my son but for the community. I feel the weight of the community as a caregiver. It’s not just about our loved ones with sickle cell but helping to lighten the load for thee entire community,” Touray said.
But she and Dahn acknowledge there are immense challenges, especially trying to keep a job when you have a child that may be frequently hospitalized.
“I was that parent. Typically, I would have two kids in the hospital at the same time,” she told McGee and Touray.
“Keeping a job was such a challenge because even if you have an employer who was sensitive to what you’re going through with your kids, which some of them weren’t, if you’re not working, you’re not getting paid. So that is a huge challenge that a lot of caregivers, that I experienced with my children early on,” Dahn added.
Touray faced similar challenges working in corporate America.
“Employment, I’m just piggybacking on what Mapillar said, it is definitely huge, but some of the other challenges are issues with siblings because not all my children have sickle cell. So, for ones that don’t have sickle cell sometimes they just don’t get it. They feel like you’re playing favoritism to the one that does.”
To find out more about about Dahn and Touray’s stories and how they’ve navigated the challenges of caregiving, watch the TV series “Unveiling Sickle Cell: Beyond the Pain.”
-By Shelby Lin Erdman