Local teen delivers comfort and care to the chronically ill

Canton resident Spencer Raifman, 18, knows more about hospital stays, doctor’s visits, and physical exams than most people. Raifman has undergone nine major surgeries as he deals with Ehlers-Danlos Syndrome (EDS), a genetic condition he was born with that affects connective tissues, including skin, joints, and blood vessel walls, and leads to cardiac, neurological and gastrointestinal issues. He also knows what it feels like to have someone think of him as he undergoes treatment. Following one of Raifman’s first surgeries, he received a care package from some friends that contained activities to engage him along with other things to comfort him during his hospital stay.

Spencer Raifman, founder and president of Chronic Zebra Foundation

“It kept me busy in the hospital,” he recalled recently. “It meant a lot to me.”

His friends’ kindness inspired Raifman to found Chronic Zebra Foundation (CZF), a nonprofit organization that sends personalized gift packages to children and adults, and handmade fleece blankets to children, who are dealing with a chronic or terminal illness. Raifman explained that medical school students are taught that when they hear hoofbeats, they should think horses, and thus consider a likely diagnosis for a problem. The zebra in Chronic Zebra Foundation represents a diagnosis that is unexpected and may follow years of testing.

As a first grader, Raifman began to experience joint pain and discomfort. His symptoms continued and affected other parts of his body. Following many visits to doctors, when he was in eighth grade, he was diagnosed with Ehlers-Danlos. There is no known cure for the disease.

Raifman has lived in Stoughton and Easton, but always spent a lot of time in Canton, where his grandparents Leslie and Arthur Pearlstein have lived for 50 years. His mother, Rachel Raifman, graduated from Canton High School in 1990. Spencer is the president of CZF, Rachel is the chief financial officer, his grandmother coordinates the blanket program, and his grandfather uses his business background in his role as volunteer. A group of other dedicated volunteers gives their time to making sure that as many patients as possible receive a package.

People who wish to receive a blanket or care package fill out an online application in which they explain their situation. The information is transferred to the CZF website at the beginning of each month. The handmade fleece blankets are only for children younger than 18. Leslie Pearlstein finds volunteers to make blankets.

“Being in a hospital can feel daunting and sterile and doesn’t feel very comfortable,” Raifman said. “Having a blanket can make it feel more comfortable or safe.”

Raifman asks applicants to answer questions about their likes and dislikes, favorite colors, things they like to do, and any allergies they may have. The care packages are filled with items that may include games, coloring books, markers, Play-Doh, notebooks, socks, stuffed animals, pens, pencils, and small quantities of healthcare products specifically for patients with chronic illnesses.

“I try to personalize it as best as I can,” Raifman said of each package. Over 300 care packages have been shipped across the country to date.

When Raifman started CZF, he spent a lot of his own money on items for the care packages and shipping them to recipients. He has also received financial help from individuals and from companies. “Once I got the hang of it, I built relationships with companies,” he said.

Raifman has received donations of health care products from a number of companies. Tummydrops has donated packages of naturally flavored stomach drops that help to combat nausea and stomach pain. SaltStick provides the electrolytes, sodium, potassium, magnesium, and calcium in a form that helps patients who have EDS and Postural Orthostatic Tachycardia Syndrome (POTS). Biofreeze products help with joint pain.

“When Spencer is in the hospital, he goes into gift shops,” Rachel said. “He takes pictures of products from local companies so that he gets ideas of who to solicit.”

“I keep my eyes peeled,” Spencer said.

Raifman said that he often hears from recipients after they receive their package or blanket. “I’ve gotten a lot of thank-you notes in the mail, on Instagram, in emails,” he said. “It brightens their day. It definitely reminds me of why I started it in the first place and makes me feel like I’m achieving my goal.”

In spite of his chronic health issues, he has no plans to stop his work with CZF.

CZF is starting its first local program, a project that will pair them with Boston Children’s Hospital. Build-A-Bear Workshop has donated 600 stuffed bears that CZF plans to pack in drawstring bags with crayons, coloring books and other items for children with chronic illnesses.

For more information on CZF, to make a donation, or to volunteer, go to chroniczebra.org.

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Posted by Mary Ann Price on Sep 9 2021. Filed under Features. Both comments and pings are currently closed.