GRANBY — Continued fundraising has amassed over $30,000 toward a $35,000 goal, but Granby resident Kathy Charland is still seeking community support to purchase a wheelchair-accessible van and help cover medical expenses as she copes with serious, rare health conditions.
Charland’s mother, Betty Balthazard, said she, friends and other family members have been meeting regularly to monitor donations and update supportingkathysjourney.weebly.com, a website dedicated to Charland and her medical progress.
With 152 donors, the campaign has raised $30,316, doubling the total donations since early February. A virtual music, art and dance fundraiser, shared on YouTube on Feb. 25, saw Charland speak to viewers about her condition ahead of the hour-long performance.
“In December of 2018, I was sitting having coffee with a friend and became very lightheaded and I didn’t know why,” Charland recounted in the video. “I went on from there to a grocery store. While I was there I thought, ‘Maybe I was a little bit dehydrated.’”
After getting a gallon jug of water and some food, she still did not feel well. From there, she said she began to experience sudden “episodes” of lightheadedness and a feeling of weakness or shakiness. She was a basketball referee at the time, and said that, while typically a person’s stamina increases the more they exercise, she felt she was having a harder and harder time keeping up with the running as the season progressed.
“I went on from there looking for answers, of course, as to what was happening, and was diagnosed with Dysautonomia in late 2019,” Charland explained in the video.
After meeting with doctors, Charland was ultimately diagnosed with two rare conditions: Dysautonomia in late 2019, and Spontaneous Intracranial Hypotension in September 2020. 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.
“The brain and the spinal cord share cerebral spinal fluid, and normally that circulates up and down the spinal cord and the area surrounding the brain,” Charland said. “Cerebral spinal fluid is leaking out of my spinal cord. … My brain is actually sinking or sagging within my skull because there’s not enough of the liquid. So that causes a host of issues as well, and is another big reason I’m unable to stay upright.”
Due to the “diverse, pervasive and extremely debilitating” effects of her condition, Charland must lay horizontally for most, if not all 24, hours of the day. When upright, she said 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.
Balthazard said ongoing efforts have raised enough to cover the cost of a wheelchair-accessible van, but friends and family members have not yet found a van that accommodates Charland’s needs.
“Kathy’s 6 feet tall, and needs to be reclined most of the time, so she takes up more room than the average Joe,” Balthazard explained.
While the group has raised enough for the van, she said they need to keep fundraising to help cover continued medical expenses. They also want to be prepared for any needs that may arise unexpectedly.
“We’re meeting every other week,” Balthazard said of the support group. “We’re hoping to discuss holding an auction in the fall.”
More information on Charland and fundraising events can be found at facebook.com/SupportingKathysJourney and at supportingkathysjourney.weebly.com.
Zack DeLuca can be reached at zdeluca@recorder.com or 413-930-4579.