It’s not uncommon for patients to suffer for years before finding a proper diagnosis and effective treatment for spontaneous intracranial hypotension due to spinal cerebrospinal fluid (CSF) leak. When Karri’s daughter Hailey became ill, it started her family on a ten-year search for answers—complicated by Karri’s own alarming cancer diagnosis. Watch Karri’s story of being a caregiver for a child with spinal CSF leak while also navigating her own illness.
On advocating for your child
“Parents know their children, and I knew Hailey, and I knew that before this happened, she was a vivacious, strong, outgoing girl, and nothing kept her down. So I knew when this happened to her, there was something else. And I kept pursuing it, we kept pursuing it, because I knew there was a doctor out there that would sit down and take the time to actually listen. And it took ten years, but we kept pursuing it until we found that doctor.”
On managing her own diagnosis while coping with her daughter’s
“I think as a parent you just kind of put that aside. I was more concerned about Hailey than I was myself, because I felt like I was going to get better, but I didn’t know about Hailey.”
On becoming closer while ill
“We were always very close, and I think both of us being sick at the same time did bring us even closer. She was always very stoic and very strong for me. I know she was going through things and that it was difficult for her, but she stayed strong.”
Karri’s advice to caregivers
“I think my best advice for family members when they have someone in their family sick is just to surround them with love and just be there for them and listen to them. And I think that’s just the best advice I’d have.”
The team at Spinal CSF Leak Foundation extends our appreciation and thanks to the family, physicians, and staff who assisted with this feature story, and to all those working so hard to help patients and raise awareness.
Further reading/viewing:
Resources for caregivers:
Find a Therapist
via the Anxiety and Depression Society of America
The National Alliance for Caregiving
Offering resources, information, and support for caregivers.
Rare Caregiver Respite Program from NORD
This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder.
Caregiver Support from USA.gov
Offering federal, state, and local resources for caregivers.