As a mother of 3, Jaimee cares for two Warriors: her sons aged 12 and 16. Jaimee’s daughter Mariana is a middle child who occupies a unique place between her brothers.

Mariana is an enormous help to her family. For many years, she attended the same schools as her brothers. She always looked out for them, even her older brother. As for her younger brother, she protected him from bullies, encouraged him to advocate for himself at the nurse’s office, and helped him through his anxiety attacks.

From the start, Jaimee was committed to ensuring Mariana felt loved. At home Mariana's help never went unnoticed. Her mature and independent nature always made it seem like she was doing fine. But over the years, Mariana sometimes felt overshadowed and left out. Being the only child without SCD in the family meant that her parents spent more time with her siblings. While Jaimee was in and out of hospitals with her two sons, Mariana stayed home with her dad.

“I realize that my kids need that one-on-one time. Usually after a hospitalization, we’ll go get our nails done, or go shopping.”

Jaimee thought everything was fine until she read a book that prompted her to ask herself: Does your child know that you like them? Jaimee clarified, “Not that you love them, but do you like them as people?” She decided to ask Mariana directly.

Mariana’s response changed everything. “She told me, ‘Well, I know that you love me, but I don't know if you like me because you spend all this time with my brothers,’” Jaimee said. From then on, Jaimee started to dedicate more alone time with her daughter. They now enjoy their special time together, getting their nails done or going shopping.

This has led Mariana to share a message for fellow siblings of Warriors: “Don't think your parents are avoiding you or that they have favorites.” She recalled that her mom often spent long periods at the hospital caring for her brothers. “I don't want siblings of Warriors to think that they're not loved as much because they're not getting as much attention.”

Together, Jaimee and Mariana have transformed their challenges into opportunities for growth and connection. They found strength in their journey together, and their story continues to inspire other families today. Mariana finds purpose in sharing her wisdom and lived experience at caregiver conferences, connecting with others who walk the same path. It’s a bond they share with the sickle cell community. As Jaimee described, “It's like our thing.”

At the center of every challenge lies the opportunity to grow stronger. Keonsha, a dedicated caregiver to a teenaged Warrior, knows this is true.

Keonsha proudly sees herself as a “doer and a helper.” These traits helped her tackle life’s difficulties long before she became a caregiver. Now, she works every day to pass on this strength to her daughter.

As a doer, her response to stressors is grounded in action. “I don't let my stressors sit with me. I have to do something,” Keonsha says. For her, that means figuring out what to do next or getting the information she needs to feel more secure next time. So, she teaches her children to face life’s challenges head on. Her reason is clear. “I need them to not succumb to all the pressures and all of the barriers that they will be presented with.”

As a helper, Keonsha began encouraging her daughter to advocate for herself around age 12. “I’ve always told her, ‘You need to speak up for yourself. You have words,’” she explains. “She needs to be able to listen to her body.” Keonsha teaches her that self-awareness is important when managing SCD. This approach helped her daughter become an advocate for her own health.

“I am proud. I am happy to know that she has done what she needs to do to build the capacity to care for herself.”

One lesson that Keonsha learned was the power of community. Even though she is naturally independent, Keonsha discovered the importance of seeking support. Meeting parents who had successfully navigated similar challenges inspired Keonsha. “Those parents helped me through difficult times so it wasn't that big of a deal. I didn't feel as alone. It gave me hope that she'll be okay,” Keonsha shared.

As her daughter grew up, Keonsha began to release some of her caregiving responsibilities. Today, Keonsha trusts her daughter to manage her medication. "She keeps up with her medication, so that's been helpful for me. And it also helps me knowing that she can be responsible to do that," Keonsha adds. “I am proud. I am happy to know that she has done what she needs to do to build the capacity to care for herself.”

Through her daughter's growth and their shared challenges, Keonsha's story is an example of the amazing things that can happen when love, perseverance, and a supportive community come together.

“As long as he's fine, then I'm fine. When he's not OK, then I'm not OK.”

For Elsa, mother and caregiver to a Warrior, it’s as simple as that. “What gives me hope is when I know that he's OK. So I always just try to make sure that he's OK.” And while this probably rings true for all parents, the “OK” holds a lot of weight when your child has sickle cell disease.

Thinking back to her Warrior’s diagnosis and the first conversation with the pediatrician, Elsa didn’t know what her newborn’s life would look like. Would things be OK? She describes how the doctor delivered this life-changing news at her Warrior's 1-week check-up.

“‘Hey, the newborn screening came back, and it looks like your son has sickle cell.’ He just blurted it out and proceeded to go on. The second I heard sickle cell — because of all of the negative things that I had already read — for me it felt like I heard ‘death sentence.’ I don't know what else he said because I was calming myself down.”

Elsa found out she had the sickle cell trait when she was pregnant with her son. Her son's father did not get tested, because he didn't want Elsa to worry her whole pregnancy in case his test was also positive for the sickle cell trait. They knew the baby's genetic makeup had already been determined. Elsa was hopeful her son would not have SCD, although she understood there was a chance. The diagnosis was still a shock. "I fell into a depression the first few months."

In the years Elsa has cared for her Warrior, there are certain things that keep her grounded.

“When it comes to me and my experience,
I try to be as open and as candid as possible.”

“I've learned that it's important to share, no matter who you're sharing it with. That lack of information was what left me so hopeless when we first got the diagnosis. At least when it comes to me and my experience, I try to be as open and as candid as possible.”

The other thing she stands by is keeping things as normal as possible. This goes for both her and her Warrior. For her son, it means making sure he feels as much like a regular kid as possible. “For the most part we live a normal life. We really are super intentional about not treating him like a patient. We don't talk about it a lot, other than when he's in pain.”

Elsa also likes connecting with and learning from other caregivers. As she describes, “It's been amazing, talking to other moms or other parents that have gone through this. That can shed a light on what to expect. The disease affects every single person differently, even within the same family. And every crisis is different.”

On the flip side, Elsa doesn’t let her Warrior’s disease consume every conversation.

“I want to laugh. I want to talk about all of the things that are not being talked about. All of the things that doctors don't tell us. Things that textbooks don't tell us. But I don't want to just talk about the gloom and doom of sickle cell all day.”

Lastly, Elsa knows it’s important to balance her time. While her son will always come first, Elsa understands it’s important to take care of herself, too. When she needs to unwind, she says, it’s all about travel and spending time with her extended family. “Definitely getting away... a week with just my sisters and my cousins. Spending time with my family and friends — honestly just decompressing, not talking about sickle cell.”

Once a caregiver, always a caregiver. If not physically, then emotionally. No one embodies this more than Andre, a caregiver and father whose son passed away in 2021 at the age of 36.

Though his son is no longer physically here, Andre and his wife are still deeply connected to the sickle cell disease (SCD) community. Through the years, they’ve continued to attend conferences and events. It’s important that they maintain the bonds they created during some of the toughest times. Andre and his wife love to share their knowledge and compassion with other caregivers who are going through a similar experience.

As Andre describes, “[The SCD community] is a part of my life, even though my son is gone. We want to help other family members. Try to help the community, share our stories. So that companies, researchers, whoever, can understand what we go through as a community and make it important.”

For 36 years, Andre was by his son’s side. And he learned more than a thing or two about caring for a loved one. As he explains, “We've just been health advocates for a long time.”

If there’s one thing he could stress to other caregivers, it’s not to take on the guilt of having passed down the SCD trait. Andre says, “Just don't beat yourself up too much. [We] used to beat ourselves up a lot. Why didn’t we get tested?”

“You want to be there for your child…
you put them before you and your needs.”

While caring for his Warrior, Andre often turned to his faith. He also connected with others who could understand what he was going through. He encourages other caregivers to do the same. He also recommends finding an outlet and trying to not let your role as a caregiver consume your day-to-day.

“You want to be there for your child… and you are there for your child… you put them before you and your needs. But, at the same time, life still kind of has to go on. You have to try to navigate that, and it's difficult.”

Andre also takes time to reflect on what it was like caring for a Warrior, too: “It's difficult as a father because you want your sons to kind of be like you were in some aspects but a lot of times, with sickle cell, it just can't happen that way.”

Throughout his son’s life, Andre made sure to find other ways to connect with and encourage his son. One way was to make sure his Warrior felt as normal as possible. “As a father, I always made my son feel he can achieve anything. I didn't look at him or make him feel like his illness was a detriment to his development. We were very conscious of not saying ‘No you can't do that.’” He’d encourage others in a similar situation to take a similar approach.

In many ways, Andre is living proof of a caregiver’s resilience. A caregiver never stops caring about the community and the people involved. And those bonds he formed years ago never seem to fade. “That's what brought us here into this space — we just want to do everything we can to help other people.”

For Marqué, a mother and caregiver of 2 Warriors, the first few days of motherhood were just what she imagined — until they weren’t.

“When my son was born, he was perfect. But I got a call on a Friday about 5:25 PM from the pediatrician. She said, ‘Well, I got some bad and some pretty worrisome news. Your son has tested positive for sickle cell disease.’ I had absolutely no idea what she's talking about. I didn't know what to do with that information.”

And then, just 10 months later, another surprise: Marqué was expecting again. During her pregnancy, she found out her second son also had sickle cell disease. While this too came as a bit of a shock, she felt more prepared than when her first son was diagnosed.

Marqué relied on her faith, drive, and determination to provide her sons with the best care from day 1. This included lots of honest conversations and encouraging them to be part of the discussions with their healthcare team as soon as they were ready. Since their pre-teen days, Marqué has shown her 2 Warriors how to advocate for their needs. There would come a time when she may not be with them during a pain crisis. She wanted her sons to feel prepared. As she explains, “I sat in the visits and the doctor would say, ‘How’s he doing?’ I'd be like, ‘He's sitting right there. I need you to talk to him. Because he needs to know how to talk to you.”

“This is the hardest season I think for me now.”

Over the years, Marqué showed her Warriors how to be good communicators with their care team. She explained how to ask for what they needed. And it worked. Her Warriors are now in their early 20s and she is beginning to take a step back as their caregiver.

This change doesn’t just impact her sons — this change of responsibilities is the beginning of a new chapter for Marqué as well. “This is the hardest season I think for me now. It's not really about me stepping away — it's about me stepping away and not responding.”

This has been a turning point for the entire family. Now that her sons are 20 and 21, Marqué has more time on her hands and is exploring what her next chapter looks like. She’s focused on her non-profit, is busy making sure other SCD families have the information and resources they need, and recently expanded their family in another way. With a laugh, she says “I looked at my husband…and I'm like I need a dog!”

A grandmother’s love knows no bounds. And that couldn’t be truer for Dianne, 
a self-proclaimed “tenacious” caregiver, to her now 24-year-old granddaughter.

When her Warrior was diagnosed with sickle cell disease, her tenacity became her guiding force. This helped her become the caregiver she wanted to be. Dianne's Warrior experienced her first pain crisis when she was just 4 years old. “I think that Warriors live in pain before it’s really identified because they are not able to communicate with you. So, I think that I noticed what I thought was her first pain crisis at that age.” Dianne had been looking out for the signs ever since her granddaughter’s diagnosis. “It looked all concerning. It takes over,” she described. “You just have to stop whatever you are doing and get her the necessary help that she needs.”

“ I had to keep myself healthy in order to take care of her, especially being a grandma.”

Over the years, Dianne and her Warrior would come to know the hospital well. “I didn’t go to work. We were in the hospital for maybe two, three days, sometimes a week or more,” she shared. Realizing what it took to be a caregiver, Dianne understood that she would need to make some life changes. She explains, “The challenging part was I changed my career. I was missing so much work that it was a struggle to hold a job. So I became an educator. That was very helpful because we were on the same calendar when she was at school. And she came to the school where I taught so that also helped.” This decision aligned their schedules. It also gave her the flexibility to better balance caregiving and her career.

The word “tenacious” captures her determination and resilience. But Dianne acknowledges that her tenacity, while admirable, can sometimes take a toll. Taking care of herself is not just a luxury, but a necessity. She compares it to putting on your own oxygen mask first on an airplane. “You need to get oxygen to be able to help someone else. I had to keep myself healthy in order to take care of her, especially being a grandma.”

Dianne's own experiences inspired her to advocate for fellow caregivers. “There is really not enough support, and I think that it's everything. Patient-centered care is really good because we are there for that purpose. But there should also be some type of caregivers center as well.” She envisions a dedicated space where caregivers find peace of mind, connect with peers, and access tailored resources.

Until then, Dianne explains that love is the reason she’s able to do all that she does. “Love. Everything revolves around love.”