WATERVLIET — While Karen Gill, 42, of Watervliet was trying to place her 10-year-old daughter, Charlotte, into their Ford Edge two weeks ago, Karen suddenly injured her back. However, this strange occurrence had a legitimate reason: Charlotte — who also goes by her nickname, Charli — had been undergoing immense growth spurts within the past few months, to the point that her mother is finding it more challenging to transport her anywhere.
This led Karen to come up with the idea of starting up a GoFundMe page with a goal of $12,000 called “Help Charli Get New Wheels” at www.gofundme.com/help-charli-get-her-chariot where she would use the funds to purchase a wheelchair-accessible vehicle to better facilitate Charli’s everyday transport. While the accident and GoFundMe page happened recently, they stemmed from a decade-long history of health-related hardships.
Charli had suffered a severe stroke a few days before being born but the doctors only found out when she was 8 days old. By the time Charli was 6 months old, she had developed a rare form of epilepsy called infantile spasms or West syndrome, and had around 500 seizures a day.
“I was in total shock since I thought I had a very normal pregnancy, and I don’t think I’d absorbed what was told to me by the doctors then,” Karen recalled. “When Charli was born, she was kind of fine but it felt bizarre to know afterwards that she did have a stroke.”
According to the U.S. Department of Health and Human Services, West syndrome is “characterized by a specific type of seizure [infantile spasms] seen in infancy and childhood” where the individual’s body would abruptly bend forward while their limbs get stiff — they often occur after the individual wakes up or was just fed, and can also be comprised “of up to 100 spasms at a time.” The department states that surgically removing brain lesions or giving some medications which can help alleviate or stop seizures like corticoids, vigabatrin and antiepileptic drugs, can treat improve the individual’s condition.
Karen said that Charli tried nine different kinds of medication and required 30 surgeries since birth, including traveling to the Detroit Children’s Hospital in Michigan with her then-husband when Charli was almost 2 years old to remove the left half of her brain which did stop the seizures, and getting a VP shunt to drain spinal fluid from a skull cavity.
Karen said that the stroke had originally caused the middle of Charli’s brain’s left hemisphere to never develop, which had contained the auditory dorsal stream, meaning Charli should have lost the ability of speech control; the stroke had also caused parts of the left hemisphere to move to the right hemisphere which then picked up some of it. This has caused Charli to unusually still develop speech and start puberty early within the past year alone, the latter causing her aforementioned growth spurts.
“In the last six months, it’s gone from me being able to lift her to not being able to do so much anymore,” Karen said. “It’s difficult for me to try to lift and transfer her, which is now very unsafe.”
She added that Charli is now 4 feet 7 inches tall, weighs 117 pounds and has remained seizure-free since 2010 so far, and uses a wheelchair, connecting this to why she needs money to afford an accommodating vehicle like a van, where Karen would not need to dismount Charli from her wheelchair, but rather just wheel her into the vehicle safely.
Charli is now in fifth grade in a special needs program with around eight other children at the Red Mill Elementary School in East Greenbush and she also has physical therapy.
Karen said that “math and music seem to be her strongest suits, and she has music therapy too. She’s had musicality since an extremely early age. Music is very motivating for her and they use it a lot at the school.”
When asked if Charli can play any instruments, Karen answered in the negative although she noted that Charli does enjoy trying to play the drums and maracas because “she likes to shake things. She does, however, has weakness on her right side so it’s difficult to play using both hands. She’s not completely paralyzed on her right side and she has no use of her upper right hand area.”
Looking ahead into what Charli’s education could be like in the future, Karen said, “I don’t know, that’s a very scary unknown for me right now. But she will be in sixth grade next year and go to middle school for sure, all in self-contained special needs classrooms and an adjusted curriculum.” For now, Charli has been trying to learn life and everyday skills in class too like remembering her house address, creating breakfast, making pancakes and brushing her teeth.
Saying that Charli still visits Karen’s now ex-husband and grandparents on weekends, Karen said she appreciates their constant support and believed that “it takes a village when it comes to being a special needs parent.” She also brought up how she has joined a Facebook group for special needs parents who have children with similar challenges, with whom she has developed a sense of “camaraderie.”
Speaking of village, the GoFundMe page has received a hair over $3,000 from 26 people in just six days. Karen expressed shock and gratitude for the mix of family, friends and strangers who have donated to the cause so far.
When asked if she had a message to the public about her daughter and her overall situation, Karen said, “Don’t be afraid to ask questions because I think a lot of people tend to shy away, especially after initial diagnosis. You may also lose a lot of people because they don’t know how to go about dealing with someone with a specific condition. There’s sadly lots of isolation that comes with having a child with disabilities.”
But Karen concluded that it won’t happen on Charli’s case, “On paper, she’s severely disabled but she doesn’t match up with that for sure, because when you look at her and get to know her, you see her in a different light. She’s so lucky to have supportive friends and family, and she’s a truly lovable child.”