GRANBY — Although sudden, serious and rare medical conditions have “grounded” Kathy Charland by requiring her to spend all 24 hours a day lying horizontally, she remains the vibrant, upbeat person who is often eager to give to her community.
Now, the Granby resident and her friend, Paul Sorrentino of South Deerfield, hope the community might support her in return. Sorrentino created a fundraising page at bit.ly/39luoQq with a team of friends and family members to support Charland’s medical needs following her diagnosis with two rare conditions: spontaneous intracranial hypotension and dysautonomia.
In the simplest terms, Charland explained, brain and spinal fluid is leaking out of her spinal cord and her nervous system is unable to regulate essential body functions properly. She also experiences lower pressure in her head.
Before her diagnosis, Charland enjoyed participating in just about any team sport, including football, volleyball and basketball, and individual activities such as hiking, kayaking and walking. She was active right up until she first began experiencing symptoms.
“In 2012, the symptoms were mild pain and muscle tenderness,” Charland said via email. “Many doctors did not know. Several dismissed it as — while they didn’t know what was going on — something that did not fall within their specialty. One doctor advised me that I just needed to stretch!”
Charland was ultimately diagnosed with spontaneous intracranial hypotension after the doctor she sees for dysautonomia told her he doesn’t have any other patients with the head pressure symptoms she was having. This led her to research what else could be causing these symptoms “and, ultimately, to the SIH diagnosis” in December 2018.
Due to the “diverse, pervasive and extremely debilitating” effects of her condition, Charland must lie horizontally for most, if not all 24, hours of the day. When upright, her heart rate increases dramatically and her blood pressure can drop, causing a loss of blood flow to her organs, including her heart and brain.
Despite these limitations, Charland maintains and builds connections in her community by attending church, a Bible study group and other virtual gatherings. She enjoys staying creative through graphic design but said some of her hobbies have become harder to maintain as her illness has worsened.
“I did video production for a couple of ministries and for fun,” Charland said. “I have a social media management, marketing and design business and I’ve done graphic design for that, along with a previous employment position and also for some ministries. Apart from creating an occasional graphic, I haven’t been able to continue the videography or graphic design.
“I started learning to play the drums, and when I wasn’t able to do that anymore I picked up the keyboard,” she said. “I had also joined a choir. I was never much of a music person, but I was enjoying learning those different areas. Occasionally, I’ll watch an instructional keyboard video or play a simulated keyboard on a tablet, but for the most part, I’m not able to do any of that now. I’m hopeful that I’ll be able to resume some or all of those activities in the future.”
Before her diagnosis, Charland worked with children with learning disabilities or who had sustained brain injuries — a job that’s inspired her to want to expand their opportunities. She recounted how one child she worked with enjoyed sports but had a hard time participating because of physical disabilities.
“I helped to connect him with some adaptive programs, but also wanted to create more opportunities for him and kids like him,” Charland said. “I started plans with a local college to create an adaptive sports program locally.”
She said she hopes to continue working on developing the adaptive sports program as pandemic-related restrictions lift. She also hopes her health will improve enough for her to participate on site when it comes to fruition.
The fundraiser, at bit.ly/39luoQq aims to fund a wheelchair-accessible vehicle for Charland. She said her condition is not covered by insurance, and in addition to the vehicle, donations will help cover essential everyday expenses. As of Tuesday, the fundraiser had collected over $19,478, from 74 donations, toward a $35,000 goal.
Also found on the “Supporting Kathy’s Journey” website is the “Paper K” project. Those who are interested can print out a paper version of Charland, take pictures of their cutout in various places and share them with Charland on social media using #SKJadventures or by emailing photos to helpfortheway@gmail.com.
Additionally, a virtual benefit for Charland is in the works for Feb. 25. The benefit will include music, art and dance with various performers. More information will be made available at facebook.com/SupportingKathysJourney/ and at supportingkathysjourney.weebly.com/events.