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Meet Caylin – A CHOP VIP

Meet Caylin! Caylin is a CHOP VIP (Very Important Patient). Our CHOP VIP’s are some of our patient ambassador’s that let us share their story and experience with our amazing corporate partners. Caylin is just one of our many CHOP VIP’s, and her story below shows how Children’s Miracle Network funds have helped her.

Caylin was just a few weeks old when she was diagnosed with sickle cell disease, a condition that causes the red blood cells to get stuck in the blood vessels, blocking blood flow and oxygen to parts of the body. The disease can cause fatigue, infections, organ damage, stroke and periodic episodes of pain that can last anywhere from a few hours to a few weeks. The life expectancy for people with sickle cell disease is less than 50 years.

Growing up, the slightest fever meant a trip to Children’s Hospital of Philadelphia (CHOP), where she would be hospitalized for at least 24 hours to receive high-dose antibiotics to prevent infection. As a toddler, she suffered a severe and progressive respiratory infection that can result in lung injury, breathing difficulty and even death, and she’s struggled with periodic episodes of pain in her chest and legs. Caylin has undergone blood transfusions every three weeks since age 5 to decrease the pain and reduce the risk of stroke. The transfusions can take up to four hours. She is currently involved in a clinical trial of a drug that could eliminate the need for blood transfusions, a possibility that has Caylin and her family very excited.

“We’re glad that we have the option of coming off of the blood transfusions, because it’s been so many years,” says Caylin’s mom, Melissa. “That’s one of the reasons why we’re so excited about being at Children’s Hospital, because it’s cutting-edge research, and they have a great Hematology department that supports and prioritizes sickle cell patients.”

Funds raised through Children’s Miracle Network support CHOP’s Patient and Family Services programs, which help children like Caylin and their families cope with the hospital experience.