Spreading Awareness in September

Posted: Aug 31, 2018

September has been designated as an awareness month for two of Casey Cares biggest diagnoses.

Families, caregivers, charities and research groups across the United States observe September as Childhood Cancer Awareness Month. In the U.S., 15,780 children under the age of 21 are diagnosed with cancer every year.

Officially recognized by the federal government in 1983, September is also National Sickle Cell Awareness Month. Sickle cell disease is estimated to affect 100,000 Americans.

Not just in September but every day of the year, Casey Cares know that children benefit from continuous, ongoing support. Casey Cares bi-monthly customized programs give families dozens of opportunities to create positive family memories.

"When a child has a life-threatening illness, often the first reaction is to focus on the medical care," said Dr. Aziza Shad, head of the Herman & Walter Samuelson Children's Hospital at Sinai in Baltimore. "But it's not just medical care that gets a child better. The support mechanisms that the foundations bring here are almost essential."

Casey Cares kid Dalton, 17, was diagnosed with acute lymphoblastic leukemia (ALL). His mom Melody said they found out that no matter how much chemotherapy he received, it would never really go away. They decided to switch to CAR T-cell therapy, a type of treatment in which a patient's T cells are changed in the laboratory so they will attack cancer cells.

Melody said the downside to the treatment is that is that he does not produce his own immune system so once a month, for the rest of his life, he has to have immunotherapy. His bone marrow is now testing clear and he’s in remission.

Casey Cares kid Abigail, 7, completed her ALL treatment last July.

“It’s something that forever changes you,” said Abigail’s mom Katie. “We’ll never be the same. We’re more grateful for having a strong-willed child than we were before. She’s freakishly brave.”

Blood disorders, like Sickle Cell disease, are the second largest diagnoses Casey Cares serves.

Casey Cares kid Elijah, 11, has been able to meet other kids who have the same thing he does through our programs.

“It’s like one big family,” Elijah’s mom Lisa said. “It’s a blessing. Sickle cell is a very serious illness and you have to know the protocols and the medicines and what they can eat to sustain their ability to accumulate red blood cells. A lot of people don’t understand it.”

Casey Cares mom Petrina, mother to five-year-old Ji’Air, said she appreciates the support of other families who are living with sickle cell diagnoses.

“I’ve gotten a lot of information from talking to the other parents,” Petrina said. “There’s a lot of support. It makes it a little easier. It’s been a really good experience.”

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