“The nurses and doctors at Boston Children’s are like my family. I have been with some of them for most of life; they’ve watched me grow up.”
It was pure fate that brought Jahquae and PTI together. We happened to reach out to her the week before she would fly to Boston for a 2-week stay at Boston Children’s Hospital. She must have a standard procedure for her cystic fibrosis treatments every three months. Delighted by the timing, PTI went to visit Jahquae at the Boston Children’s Hospital, located in Boston, Massachusetts.
Jahquae grew up in Bermuda, where she is one of two people with cystic fibrosis. This compared to the roughly 30,000 people in the United States who have cystic fibrosis, and 70,000 people with CF worldwide. Jahquae explained to PTI the frustrations of growing up in a country that barely recognizes the disease. This lack of knowledge, impedes her access to health care and her education for cystic fibrosis. “I’ve only gone into Bermuda hospitals twice for CF; and both times I’ve had to tell them how to do administer my treatment,” Jahquae elaborates on her frustrations, “and when I go in, they even ask me, ‘oh, what’s wrong? Why are you at the hospital?’.”
Jahquae and her family have concluded to send her (along with a family member) on trimonthly, 3-week visits to Boston Children’s Hospital. 700 miles away from home. However, Jahquae considers it her home away from home saying, “The nurses and doctors at Boston Children’s are like my family. I have been with some of them for most of life; they’ve watched me grow up.”
Jahquae tells PTI about how her mom has faced the financial struggles of being a single parent. Jahquae was eight years old when her father passed away. Jahqaue’s mom has been raising Jahqaue, now 20 years old, and her 11 year old brother Aquiyei. Jahquae’s doctors helped her find affordable options for the otherwise expensive medical equipment she needs. Jahquae explained that it is because of her close, nurturing relationship with her nurses that she has decided to become a pediatric nurse herself.
However, embarking upon such frequent and long-lasting visits to Boston Children’s Hospital, Jahquae has faced enormous difficulties in completing her education necessary to becoming a nurse. Her oxygen levels plummeted during her senior year of high school and she had to be airlifted for treatment. Because of this event, she was forced to miss much of the school year, thus making it impossible to graduate from Cedar Bridge Academy with her friends.
“Before the story in the news, I stayed quiet about my cystic fibrosis.”
Despite the medical crises and emotional trauma of not graduating the same year as her classmates, Jahquae persisted in pursuing her GED. She received her GED last year, and has headed off to London, England to attend University of Worcester. She has been living with her aunt for the past year, while she is adapting to the United Kingdom. She will be officially starting school this upcoming Fall.
Upon receiving her GED, her family recreated a proper graduation ceremony and party for Jahquae, which landed Jahquae and her inspiring story on local news. “Before the story in the news, I stayed quiet about my cystic fibrosis. I didn’t hide it and my classmates knew about it, but I never really talked about the struggles I’ve gone through with it,” Jahquae told PTI.
Jahquae uses her social media to not only express herself, but to connect with people within the CF community. Snapchat and Instagram are just a few of Jahquae’s favorite platforms, and she described the power of connecting with people who she would have otherwise never known. “I follow a lot of CF pages, I go through their pages and take in information,” Jahquae described. She spoke about connecting with the CF community through websites and apps saying, “It’s nice knowing other people with CF and speaking to other people who know what you’re going through.”
“It’s nice knowing other people with CF and speaking to other people who know what you’re going through.”