Big Plans Despite Living With Sickle Cell Disease

Kelvin

September is Sickle Cell Awareness Month 

Eleven-year-old Kelvin is excited about his future.

When he grows up, he wants to invent products that make people’s lives better and become a police officer to serve his community — but first, he would like to finish the book he is writing about the Holocaust. He recently became interested in that time in history while reading.

“I’m almost finished,” he said. “I just have a little more research to do and I found this app that will help me with the illustrations.” 

Listening to Kelvin talk, writing and illustrating an entire book is no big deal. He says he will finish the book and keep working on his business plans until he is old enough to enter the police academy. If he did not tell you, you would never know he was battling sickle cell disease (SCD), a rare and complex blood disorder.

From the beginning 

Kelvin’s battle started at birth. 

As a newborn, doctors discovered that he had sickle cell disease (SCD) and that his life would be different than predicted. 

Kelvin’s mother, Takesha, who is a carrier of the sickle cell trait, said all her children were screened for SCD at birth. However, Kelvin is the only other carrier in the family and the only one that has developed SCD.

When children are healthy, their red blood cells are round and easily move through blood vessels to carry oxygen throughout the body. 

For children like Kelvin, the hemoglobin inside their red blood cells is abnormal, which causes these cells to become hard, sticky and look like a c-shaped farm tool called a sickle. 

Kelvin’s sickle-shaped cells are problematic in many ways, including their characteristic of dying early and often, which creates a constant shortage of red blood cells. When these cells live long enough to travel through blood vessels, they often get stuck and clog the blood flow. This is extremely painful for Kelvin, and it can be a catalyst for other serious complications such as infection, acute chest syndrome and stroke.

Kelvin and Dr. Titilope Fasipe, co-director of the Texas Children’s Sickle Cell Program

Care at Texas Children’s Hospital

“Ten percent of the sickle cell population is at risk of having a stroke,” said Dr. Titilope Fasipe, co-director of the Texas Children’s Sickle Cell Program. “The likelihood of a stroke in SCD children is something we screen for often, and one of Kelvin’s ultrasounds indicated that he was in that percentage.” 

Following this discovery, Kelvin’s trips to Texas Children’s increased from approximately three times a year to at least twelve so doctors can administer monthly blood transfusions. Blood transfusions are an effective way to prevent a stroke occurrence. 

And even though coming to the hospital once every month is life-altering for a child, Kelvin is known in the clinic for his positive attitude and impressive resilience. 

Takesha says “impressive” is the perfect word to describe her son. She proudly reports how well he is doing in school and how fearless he is when wanting to try different activities and sports. She adds that her caution around Kelvin’s asthma and SCD often wins when it comes to his extracurricular activities — because he definitely would opt to do it all. 

“I’ve played football and soccer before,” the now sixth-grader said. “I was injured about a year ago and I haven’t gone back, but I want to as soon as I can.”

Dr. Fasipe said she understands a lot of parents’ hesitation around what their children participate in, but it’s important to know that children with sickle cell can be active. “I tell families to allow their child to participate in activities that are fun for them, and encourage them to build in limitations by listening to their own bodies.”

Progress in sickle cell treatment

Having conversations around activities for sickle cell patients is a sign of the progress in SCD research and treatment. 

“Before the 1980s, 50% of children with sickle cell disease died before the age of 5,” Dr. Fasipe said. “Now 90% of children with sickle cell disease live to celebrate their 18th birthday.”

Takesha says her family is taking the journey one year at a time, but she does know a few things for sure. “I know we can’t lose faith, I know we can’t be afraid to ask for help, and I know we are at the absolute best place for Kelvin’s care.” 

 

Source: TCH Blog

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