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Date: 3/18/2015
WILBRAHAM – Bella Bartolomel is a 15-year-old sophomore at Minnechaug Regional High School who hasn’t had what could be considered a normal teenager’s life since May 26, 2012, when she sustained a concussion during a soccer tournament. Later that year, Bella was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).
Ellen Bartolomel, Bella’s mother, told Reminder Publications within the past month her family decided to start a Give Forward campaign for Bella to receive treatment and testing at the Carrick Brain Clinic in Atlanta, GA, from March 30 to April 4. The clinic specializes in traumatic brain injuries.
POTS is often developed after great bodily stressors or becoming sick with a virus, according to the Dysautonomia Information Network. Some people have POTS for their entire lives. Teenagers sometimes develop POTS during their years of increased growth and about 75 to 80 percent show no symptoms during their adulthood.
Bella said her symptoms include dizziness, nausea, headaches, difficulty maintaining focus, occasional double vision, aches throughout the body, insomnia, and loss of appetite.
“I was playing soccer at a tournament down in Pennsylvania and I went for a head ball, probably about ten minutes into the second half, and it was just a routine head ball,” Bella added. “Everything went as planned, so I kept playing and we didn’t think anything went wrong because everything seemed normal.”
Bella said after the game she and her teammates were sitting by the side of the field and “when I did go to stand, my knees gave out and I almost fell, but my dad caught me before I fell.”
She added, “Girls on my soccer team were constantly getting concussions, but it would usually take them two weeks to bounce back.”
The doctors that Bella has seen have yet to discover why she has difficulty supporting herself, she noted.
“I can’t walk or stand or do anything [when this happens], I just have to sit and wait until it goes away,” Bella explained. “My legs feel really heavy.”
Ellen said Bella went to “being a kid involved with three different sports” to being one unable to play any sport because of her illness. Before her POTS diagnosis she had little health problems other than the occasional common cold.
“And then all of a sudden to have everything come to a screeching halt was hard and at first we kept saying, ‘This is going to pass’ and as time wore on and months turned into a year and then a year turned to two years, and now we’re going on three years, it’s been hard,” Ellen explained.
Most recently Bella has begun slowly getting back into soccer, Ellen said.
“Everything has changed,” she added. “She has to sit there and think about, ‘What do I have to do today? How much energy do I typically have?’ and then sort of plan out how much she does in increments because all of a sudden if the tank runs out, she’s done.”
Ellen said she believes Bella’s concussion could be categorized as trauma to the body, which triggered her POTS.
“I don’t think anybody kind of wanted to connect those dots and say, ‘This is what led to led to this,’ but that’s why I’m interested in getting to the care clinic to see [if there is] a connection between the two,” Ellen added.
Bella has seen numerous physicians during the past three years, including through hospitals such as Massachusetts General Hospital in Boston, Ellen explained.
“There hasn’t been a lack of effort on the doctors’ part; on our part,” Bella said.
The Bartolomel family hopes Bella’s visit to the Carrick Brain Clinic will find the root of the problem described as “brain boot camp” rather than only focusing on alleviating symptoms exclusively, Ellen said.
“Because her POTS and her autonomic dysfunction started with a concussion, they’re thinking that by retraining the brain they’re going to get the autonomic nervous system working the way it’s supposed to and therefore the symptoms will gradually decrease,” Ellen added.
Within a week, the online fundraiser reached 75 to 80 percent of its $10,000 goal, Ellen said. As of March 16, the Give Forward campaign has received 135 donations for a total of $11,360.
“We thought it was going to be a very lofty goal, but we were shocked when [it reached the goal within two weeks], Ellen said. “It was so quick... We put it out to friends and family and the week we opened it up to Facebook, I was stunned by the response.”
For more information about Bella’s Give Forward fundraiser, which will be open for donation until early May, visit www.giveforward.com/fundraiser/ghk7/bella-s-team.