Like most ten year old girls, enCourage kid Zuri loves hanging out with her friends after school, attending birthday parties, shopping trips, and other activities. Unlike most ten year old girls, Zuri faces the barrier of living with sickle cell disease.
Due to her disease, Zuri’s red blood cells contort into a sickle – or crescent – shape. These cells die early, leaving a shortage of healthy cells and blocking blood flow, causing pain, fatigue, and infections.
Growing up and living with sickle cell has not been easy for Zuri and her family. “Zuri often experiences attacks of pain, gets very tired very often, and has even suffered infections from her disease,” explained mom Nathalia. Many times, these symptoms will result in multiple hospital visits, different medications, and occasional blood transfusions.
“The hardest part is that she often misses school and has to endure frequent hospital stays. Sometimes we feel like sickle cell prevents Zuri from being a kid.”
Like many children in our program, Zuri has experienced feelings of loneliness and isolation due to her illness. Missing many days of school, outings with friends, and special occasions due to pain attacks or hospital stays is not easy for any child to endure. “Sometimes I wonder why I have sickle cell,” Zuri shared, “but I’m so thankful for my friends at enCourage Kids who make me feel normal.”
Zuri and mom at our 2015 NYC holiday party at Clyde Frazier’s
Through our Escapes program, Zuri has found a second family; a group of friends who care about and understand her feelings and condition.
“Knowing that she has a support system – this big community of love – to help her get through her barrier of sickle cell disease is so special. We cannot thank enCourage Kids enough for all that they have done and continue to do for our kids,” Nathalia expressed.
Zuri and her family have enjoyed many enCourage Kids outings over the years. Some of their favorites include movie nights, sports games, holiday parties, and our recent board decorating event with martial arts master Leif Becker in preparation for Breaking Barriers.
Nathalia artfully shows a sickle cell on her board, with her daughter’s name framing the curved shape. She painted the word ‘believe’ inside a heart, showing that she believes one day there will be a cure to Zuri’s disease. On Zuri’s board, you can see the phrase ‘let’s be one’ boldly written. Zuri’s barrier board represents the importance of sick children feeling comfortable and included among friends and family during times where they may feel like an outcast due to their illness.
“I am so thankful for enCourage Kids every day,” Nathalia shared. “You make our children feel ‘a part of’ instead of not – and it is such a blessing.” Zuri and her family will be enthusiastically cheering on Leif as he breaks through their boards on May 11th!
To learn more about Breaking Barriers, click here.