By: Caroline Pease I Published: March 3, 2025
Being referred to as ‘one in a million’ is typically seen as a compliment, yet for Jane Howlett, it was anything but.
At the Shining Stars show, Jane took the stage alongside buddies and stars, all illuminated by the warm glow of the spotlight. The sequins of their lovingly crafted costumes caught the light, sending flecks of color dancing into the hushed darkness of the audience. Whether gliding to the festive chime of Christmas music or grooving to the timeless energy of Elton John, each performer moved with a rhythm of their own—some with practiced precision, others swaying freely, their joy spilling across the stage with every step.
Offstage, Jane, a 19-year-old Cranford native, has faced an arduous journey. Just shy of her sweet sixteen, she spent the turbulent first quarter of 2020 in a flurry of doctors’ appointments.
She is no stranger to hospitals. At eight years old, Jane was diagnosed with Plummer-Vinson, an uncommon condition causing tissue growths in the esophagus, after repeated episodes of choking that began when she was three. For the next eight years, Jane underwent periodic surgeries to cut back the webbing that shrunk her airway.
Yet, it would not be until seven years later that Jane received her final diagnosis.
A routine check-up and blood work revealed discrepancies among Jane’s vitals, leading her down a long road of hematologist visits, specialist centers, and a bone marrow biopsy. No doctor could pinpoint what was wrong.
After exhausting all efforts, Jane and her family traveled to the Children’s Hospital of Philadelphia (CHOP), where doctors sifted through the haystack of her medical records and finally found the needle. In June of 2021, Jane was at last diagnosed with Dyskeratosis Congenita—odds of one in a million.
Dyskeratosis Congenita is an extremely rare genetic condition that shortens and delays the regeneration of telomeres, the protective cap at the end of each chromosome. This condition leaves the body vulnerable to complications like cancer. Jane is currently suffering from bone marrow failure and awaiting transplant.
“It wasn’t heartbreaking news until it started setting in that there would be no more normal,” said Jane.
Dyskeratosis Congenita can impact various systems, requiring Jane to undergo medical monitoring and frequent appointments to manage her condition. The condition affects her energy levels and immune system, making everyday tasks more exhausting and increasing her susceptibility to illness.
At first, Jane was apprehensive to share her diagnosis, fearing people would treat her as if she were made of porcelain.
“When I first got diagnosed, I didn’t want to tell anyone. Once you tell someone you’re sick, they don’t look at you the same ever again,” said Jane.
However, Jane found solace in Team Telomere, a nonprofit that connects individuals with telomere biology disorders, provides treatment, and educates the public. Through the organization, Jane connected with individuals from around the world who share the same condition.
“You can be sympathetic, but you don’t know what it’s like to be in my body. They do,” said Jane.
Despite an uphill battle, Jane remains positive and radiates kindness, most prominently through her involvement with Cranford’s Shining Stars Network.
Shining Stars hosts inclusive events, like a bi-annual dance recital, for individuals with special needs. Jane began volunteering in 2018 after attending one of the shows in 8th grade.
“[Shining Stars] took a chance on me; they don’t usually accept 8th graders,” said Jane.
Now, Jane is a driving force within the organization. She choreographs routines, organizes events, and trains new “buddies” to work with the “stars.”
“Jane is absolutely essential to the success of our programs. It is incredibly special to be a part of her journey where she is eager to learn and enhance her leadership,” said Director Nicole Greene.
Shining Stars has been a guiding light of inclusion and confidence for Jane. When she joined, she saw it as a space for self-expression. Now, it empowers her to embrace her potential beyond her condition.
“When you’re in 8th grade, you’re going through all these things like ‘everybody hates you, everybody judging you, you’re weird.’ Seeing all these participants living the way that they are and not caring what everyone is thinking is so inspirational. This is how everyone should live their life,” said Jane.
Jane’s leadership extends beyond Shining Stars and into college. Since she commutes due to medical needs, she wanted to get involved. The summer before freshman year, she applied and was accepted into Kean’s Leadership Institute Bronze Program.
“I wanted to make a difference. I didn’t want to just go to school and go home… just having people to help you along,” said Jane.
Through the program, Jane volunteered, attended leadership workshops, and had her Transition to Kean (T2K) with other “Bronze” students. At the conclusion of freshman year, she applied for a GEM position.
A General Education Mentor (GEM) co-facilitates T2K classes. However, as a Leadership GEM, Jane was charged with interviewing the next class of “Bronze” students and organizing their retreat. Now, she leads meetings and serves as a Leadership Specialist.
“I wanted to help people come into college, make it a safe place, answer questions, be that role model to other people,” said Jane.
Jane’s passion for inclusion does not go unnoticed.
“[Jane] leads with compassion and how her decisions affect others… and doesn’t let anyone tell her that her condition can stop her from doing the things she loves,” said fellow Leadership Specialist Amber Lyn Ortiz.
For Jane, that determination is a guiding principle in how she approaches each day.
“My condition isn’t going to let me stop living my life, it’s only going to want me to enjoy it more.”
You must be logged in to post a comment.