Whether it’s dunk tanks, dance-offs, shopping sprees or sleepovers, kids facing sickle cell disease miss out on a lot of ‘kid things’ during their childhood. But since there are few outward, visible signs of the condition, children with sickle cell disease often suffer in silence.
Sickle cell disease is a genetic blood disorder that affects hemoglobin in red blood cells. In a child with sickle cell disease, red blood cells are hard, sticky and shaped like a crescent.
Kids living with sickle cell disease can experience attacks of pain, infection and stroke.
By showcasing what our kiddos are missing out on, we’re making sure the world doesn’t miss out on the opportunity to make a difference in their fight.
Diagnosed with sickle cell disease at 3 months, Isaiah has bravely endured having his spleen removed, an average of 12 transfusions a year and countless needle pokes. A true warrior, he loves doing a dance called “the dab,” playing outside and pretending to be a superhero. If you ask his doctors and nurses, they’d say Isaiah doesn’t have to pretend—he is one.
Rachel has had to quit playing four different sports, and has had to take hundreds of different kinds of medicine due to complications from sickle cell disease—2,920 yucky pills in one year, to be exact. Despite missing 120 days of school, Rachel stays focused on her grades and her plans to attend Emory University to study medicine one day.
Diagnosed with sickle cell disease within the first month of her life, Savannah has already shown the world how brave she is. At just a little over a year old, she takes two different medications every day.
LaTia has endured more than 100 I.V.s, having her spleen and gallbladder removed and more than 50 pain crises at level 10. But she’s not letting sickle cell disease hold her back from her dreams; LaTia is determined to become a marine biologist or hematologist one day.
As an infant, every time her mom would pick NaStacia up, she’d cry. Sadly, she was in pain, and her mom didn’t know why—until she was diagnosed with sickle cell disease. NaStacia’s family kept two packed hospital bags with them at all times just in case she had to go to the ER. Thankfully, she hasn’t stayed overnight at the hospital in more than two years.
Avery was diagnosed with sickle cell as an infant. Even at the young age of 6, she’s mindful not to go a single day without her medication so she doesn't have to miss out on afternoons spending time with her friends.
Emmy was born with sickle cell disease, and in her first three months of life, she was hospitalized five times. Emmy experiences around 130 debilitating pain crises per year—most often affecting her legs, eyes and head, making it hard for her to see, walk and play. Emmy often has pain crises during extreme weather changes and while swimming. Despite the pain, swimming is still one of Emmy's favorite things to do!
For Taylor, sickle cell disease means taking five medications daily and missing out on the sports she loves. But, thanks to an ever-present positive attitude, Taylor says the good days outweigh the bad.
A true competitor, Trinity has already participated in half a dozen gymnastics competitions at the age of 10. Trinity has learned to brave bouts with pain, to be mindful to eat healthy and stay hydrated and to take her medicine each day.
Kyle had 15+ visits to the ER due to fever and complications from sickle cell disease and began monthly chronic blood transfusions to lower his stroke risk. So Kyle’s mother asked his medical team about a blood and marrow transplant (BMT). Nine months later, Kyle’s older sister Kendall courageously donated her bone marrow to help her brother get well. Today, they’re happy to be out and about, telling everyone they meet about Kyle’s cure.
Knowledge is power:
Follow the #ThisIsSickleCell discussion on Twitter and Instagram
Learn about sickle cell disease and treatments
Before becoming pregnant, ask for a screening test for sickle cell trait, and ask your partner to be screened too
Have your newborn screened and review results with your baby’s doctor
If your child is diagnosed with sickle cell disease, closely follow the doctor’s treatment plan and follow up regularly
Talk to the nurse and administrators at your child’s school about special sickle cell needs
Currently, a blood and marrow transplant (BMT) is the only cure for sickle cell disease