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Like all sickle cell patients, Khalil inherited his disease. But he also inherited a quality that will be instrumental in helping him manage it: his mother’s tenacious spirit.
Khalil suffered a stroke when he was barely a day old. He spent his first week of life in the neonatal intensive care unit (NICU), and he’s been to the hospital many times since. He’s also had three blood transfusions. It’s a lot for anyone, never mind someone who’s just 1 year old. But as mom Brittney Linder says, “He’s always so happy, you wouldn’t know that he has sickle cell disease. That’s what a lot of people say, because he’s such a happy, joyful baby.”
But Brittney knew Khalil had sickle cell early on, as he was diagnosed during prenatal testing. She did extensive research and tried to prepare as best she could for her son and his condition. Still, she learned you can only prepare so much.
Brittney says she wasn’t ready for the emotional toll of having a child with sickle cell. “This is my first child and I pretty much panicked when he was born.” It was especially difficult when Khalil was in the NICU. “Being a single mother – that was hard,” says Brittney. “I didn't have the emotional support from a significant other that most people have, but God gave me hope regarding Khalil's situation, so I'm so much better now.”
Because of her early experiences, Brittney has learned that she sometimes needs to ask for help. Initially, that was easier said than done, as people were hesitant to babysit for Khalil. Brittney understands why. It’s part of the reason she’s determined to educate and advocate.
Soon, she will be helping run a parent support group for fellow sickle cell families. She’s also spreading awareness through her blog, momsagainstscd.org, and sells sickle cell bracelets. She hopes they serve as a reminder to those who wear them and a conversation starter for those who might ask about them.
What would Brittney most like the community to know about sickle cell?
“That you can live a bountiful life. I want people to know that life doesn’t stop because they have a condition. You learn to work with it and you learn to use it for good – and to encourage others who might be fighting diseases like MS or cancer. We all are fighting something – you just have something a little different. So I advocate.”
Brittney is already preparing little Khalil to teach others, especially peers and teachers, about his disease. She says, “This is my five-year plan: that someone in his school will know how to address the issue, that his peers will know what to look for when he’s having a pain crisis, that they will know how to comfort him when I can’t be there, and that Khalil will learn how to comfort himself.”
Looks like advocacy might run in the family, too.
Khalil suffered a stroke when he was barely a day old. He spent his first week of life in the neonatal intensive care unit (NICU), and he’s been to the hospital many times since. He’s also had three blood transfusions. It’s a lot for anyone, never mind someone who’s just 1 year old. But as mom Brittney Linder says, “He’s always so happy, you wouldn’t know that he has sickle cell disease. That’s what a lot of people say, because he’s such a happy, joyful baby.”
But Brittney knew Khalil had sickle cell early on, as he was diagnosed during prenatal testing. She did extensive research and tried to prepare as best she could for her son and his condition. Still, she learned you can only prepare so much.
Brittney says she wasn’t ready for the emotional toll of having a child with sickle cell. “This is my first child and I pretty much panicked when he was born.” It was especially difficult when Khalil was in the NICU. “Being a single mother – that was hard,” says Brittney. “I didn't have the emotional support from a significant other that most people have, but God gave me hope regarding Khalil's situation, so I'm so much better now.”
Because of her early experiences, Brittney has learned that she sometimes needs to ask for help. Initially, that was easier said than done, as people were hesitant to babysit for Khalil. Brittney understands why. It’s part of the reason she’s determined to educate and advocate.
Soon, she will be helping run a parent support group for fellow sickle cell families. She’s also spreading awareness through her blog, momsagainstscd.org, and sells sickle cell bracelets. She hopes they serve as a reminder to those who wear them and a conversation starter for those who might ask about them.
What would Brittney most like the community to know about sickle cell?
“That you can live a bountiful life. I want people to know that life doesn’t stop because they have a condition. You learn to work with it and you learn to use it for good – and to encourage others who might be fighting diseases like MS or cancer. We all are fighting something – you just have something a little different. So I advocate.”
Brittney is already preparing little Khalil to teach others, especially peers and teachers, about his disease. She says, “This is my five-year plan: that someone in his school will know how to address the issue, that his peers will know what to look for when he’s having a pain crisis, that they will know how to comfort him when I can’t be there, and that Khalil will learn how to comfort himself.”
Looks like advocacy might run in the family, too.
