It was a good year for readers, so we’re starting our guide with a list of giftable books about living with rare disease as patients and caregivers. We also found conversation-starting jewelry, ties and, of course, face masks.
For young readers, there’s Nico’s Story, the third book in a series from author Caryn Sonberg. She teamed up with the U.S. Hereditary Angioedema Association to create stories that help kids, their friends and siblings understand this rare disease. You’ll also find the first two books in the series, Nico’s Lunchbox and Nico’s Surprise, and other HAEA merchandise at the HAEA store.
Extraordinary! A Book for Children with Rare Diseases
Also for children, Extraordinary! A Book for Children with Rare Diseases takes a gentle, informative approach to explain rare disease. Written by Evren Ayik and his mom Kara (a teacher), this book sets out to uplift and encourage children. Evren, now a student at California State University, Fresno, shares his experience with the genetic disorder acid sphingomyelinase deficiency (ASMD). The mother-son team hope the book will increase compassion and respect for young people who live with rare conditions.
Harnessing Grief: One Mother’s Quest for Meaning and Miracles
Maria Kefalas, a professor at Saint Joseph’s University in Philadelphia and founder of the Calliope Joy Foundation, thinks of grief as her super power and published a book about it this year. The memoir, Harnessing Grief: One Mother’s Quest for Meaning and Miracles, was inspired by her daughter Cal who lives with a degenerative brain disease called late-infantile onset metachromatic leukodystrophy.
The crisis of her daughter’s condition make Kefalas a change-making advocate. Together with her family, in 2013 she started selling cupcakes for the cause, a labor of love that has amassed $800,000 for families and research.
Raising a Rare Girl
Writing professor Heather Lanier also shares an up-close look at caregiving in Raising a Rare Girl: A Memoir. The girl is Lanier’s daughter, Fiona, who lives with Wolf-Hirschhorn syndrome. The book describes how Lanier and her husband responded to the unexpected news that their child had a rare disease that affects her development. A review in The New York Times praised the memoir for illuminating “what we sign up for” when we decide to be parents.
Masks with a Message
While we dream about the day we can leave face masks behind, keeping safe has been an essential for rare disease patients during the pandemic. If you want a mask that gives a message of hope, the National Organization for Rare Disorders offers one with the message: We are living rare, living stronger.”
The Alpha-1 Foundation’s Tie for the Cure
Sure, you can do stripes or dots or paisley on a necktie, but the Alpha-1 Foundation offers a truly unique pattern — an alpha 1 antitrypsin protein strand. The protein on the Alpha 1 Tie for the Cure is what’s missing for those who have Alpha 1 Antitrypsin Deficiency, a rare disease that can lead to lung problems. Visit the Alpha-1 Foundation shop.
A Necklace That Packs a Punch
Etsy shop owner Terri Decker, who says her passion is to create jewelry that tells a story, has created a rare disease necklace with a boxing glove charm and the message “FIGHTING BACK.” The piece also includes a zebra-print ribbon (the rare disease icon). Decker is one of several craftspeople on Etsy who offer gifts that support the cause of rare disease awareness.