Lindsey Hughes has been a teacher at Beechwood High School for about three years, and even in the short amount of time she has spent with the school, she said the love and support she has received from them had motivated her to keep going.
Last October, Hughes was diagnosed with Systemic Scleroderma, a multisystemic, chronic disease in which the body produces abnormal amounts of collagen. This leads to the hardening and thickening of the skin, blood vessels, and internal organs.
Due to this diagnosis, Hughes had to take a leave from her job in January.
She is a special education teacher and helps with many extracurricular activities at the high school, like homecoming and organizing the school’s powder puff league.
“Just in a few short years, the love and support that I’ve received from staff, colleagues, parents, families, and students have really helped motivate me to keep going,” Hughes said.
Students drop off letters and gifts and send her encouraging messages. The school is also setting up a powder puff fundraiser for her through the alumni association. Hughes said she is not an alumnus of Beechwood; she is from Lexington, but the school rallies around its own in a time of need.
“Those kids are her world, and it’s just killing her right now because she can’t be there,” Hughes’ friend Sara Collier said.
Hughes must undergo a Hematopoietic Stem Cell Transplant, which costs $250,000 and will require her to live with a caregiver at the clinical site for a minimum of 100 days and up to six months.
After Hughes was diagnosed with Scleroderma, she was put on standard-care medication of an immunosuppressant, but it was not working, and her case was rapidly progressing. She decided to start doing her own research into her options.
The University of Michigan, the Mayo Clinic, and Duke University have scleroderma centers that run clinical trials. So, she decided to reach out to them to see if she would qualify.
After she started exploring her options at the University of Michigan, she said the head of the clinic told her that if she wanted to have a functioning life, she needed to look into a stem cell transplant. She and her husband, John, have a 16-month-old daughter named Ava and Hughes said she can no longer do day-to-day activities with her.
“At this point, I’m not able to give her a bath. I’m not able to take her for a walk. I’m not able to do any of our shopping or make dinner for my family,” Hughes said. “He said your best shot is to have a transplant.”
The transplant is an intensive and risky procedure that she said has a risk of death. In the meantime, she decided to visit the Mayo Clinic for a second opinion, but that also turned into an evaluation for a stem cell transplant.
“The specialists in the hematology-oncology department will determine if you are a candidate, meaning that your regular standard treatment has failed and this will be the next form of treatment, but you also have to be able to withstand the treatment,” Hughes said.
Through this process, Hughes was also assigned a social worker due to the emotional aspects of the treatment.
“I have to have a 24/7 caregiver for so many months. I’ll have to be away from my daughter for an extended period of time,” Hughes said. “So, it’s challenging in every aspect that you can think of.”
She recently found out that she qualified as a candidate at both the University of Michigan and Mayo Clinic, and they are ready to start the pre-transplant evaluation now.
“So, I have a decision to make and a wonderful decision, right,” she said. “We are thrilled because it’s literally a life-saving procedure that’s going to allow me to get back to being a functional mom, wife, teacher.”
Hughes said that once she decides, doctors could harvest her stem cells in about four weeks.
Although the procedure will allow Hughes to get back to a sense of normality by stopping the progression of the disease and reversing some of the damage that has been done so far, it will not cure her Scleroderma. She said the goal is to get her off her supplemental oxygen and improve her quality of life.
“You always wonder why people like that are dealt the cards that they are dealt because she is such a wonderful person,” Collier said, getting choked up.
Hughes has felt support throughout this process emotionally and financially, which she said has been overwhelming and incredibly humbling.
The outpour of support for Hughes can be seen through her GoFundMe page, which has surpassed her first goal of $95,000 and has over 1,100 donors.
“People are coming out of the woodwork; it’s crazy. It’ll be friends of friends of family members,” Collier said. “She doesn’t even know them, and they are, you know, donating $100.”
Hughes said that she is not sure if her insurance will cover the procedure because some companies consider the stem cell transplant for Scleroderma as experimental. If they do cover it, the cost out of pocket will be $95,000. Those are just the costs of the procedure. The family will still have to pay for her hospital stay, blood infusions after undergoing chemotherapy, medications, and their stay near the clinic, which could be up to six months.
Hughes said she and her husband feel lucky that they have come into contact with so many amazing people throughout their lives that have communities of their own that support each other.
“I feel very privileged to be able to have a community to rally around me and allow this to happen because if I don’t make it, I didn’t want to leave my family in a financial hole that they weren’t able to get out of,” Hughes said.
The GoFundMe has also helped her find other “Scleroderma warriors” around the world to lean on.
“It can be a really lonely disease. It’s rare. I had never heard of that before when I was given a diagnosis,” Hughes said. “ So, I had to do a lot of research on my own, trying to figure out what was happening and how to manage it. So, it can be lonely.”
Hughes said her family has also been monumental in supporting her. She said her husband is a caregiver to both her and her daughter while also working a full-time job.
“Her husband is amazing; he is an absolute rock,” Collier said. “You know, taking care of their one-year-old, Lindsey, paying the bills, going to work full time, going to all her clinical studies. John’s the rock; he is the one pulling it all together. He doesn’t get enough credit.”
She said that the backing from various people, including both family and strangers, has been encouraging.
“I think a world that sometimes can feel like it’s full of darkness, this has helped us see a little bit of light,” Hughes said.