In honor of Rare Disease Day, the Still family created handmade bows with zebra print and sold them to their local community in Pleasant Valley, New York. They raised $120 and donated the proceeds to the Immune Deficiency Foundation.
Parents Danielle and Jeff Still coordinated this unique fundraising effort with assistance from their two young children, Brendan, 6, and Aubrey, 2, both of whom are diagnosed with common variable immune deficiency (CVID). The siblings receive weekly immunoglobulin as treatment.
“Through the fundraiser, we hoped to raise awareness for our own two children who have a disease that requires treatment for the remainder of their lives, to explain to others the importance of donating plasma, and to bring people to the IDF website to read more about how they can help,” said Still.
“Donating is also teaching my children the value of giving, helping others, and finding a way to cope with living with a rare disease. My son, since his diagnosis, has made many sacrifices and for us, we have used donations to help him understand the reasons why his life has been so challenging and different from his peers’ lives.”
Both Brendan and Aubrey experience daily fevers and frequent infections, caused by CVID and other systemic inflammatory conditions. Still said that her family continues to seek a more complete diagnosis.
“Rare Disease Day holds an extremely important place in my heart because my children are still fighting to find a diagnosis that would ultimately give them a better quality of life,” she said. “It’s been years and when you have a rare disease sometimes things don’t always make sense in the medical world.”
The children’s immunologist referred the family to IDF during Brendan’s diagnosis phase, just shy of his third birthday, and the Stills reached out for information. IDF responded by sending a packet of publications, including “Our Immune System,” a children’s book explaining the immune system and how to cope with a primary immunodeficiency (PI), which proved particularly helpful for Still’s children.
“It has helped explain why our life is slightly different from those around us and it’s something we read and talk about frequently,” said Still. “IDF has helped both myself and my children, through articles we read on the website explaining our immune system and PI treatment, and, most importantly, by reading articles that make you feel like you are not alone. Being a part of a community and coming together with people who share a similar diagnosis has helped in more ways than one.”
If the Still family inspired you to share your story, please email us at firstname.lastname@example.org.
Receive news and helpful resources to your cell phone or inbox. You can change or cancel your subscription at any time.