At just 11 months old, Everly was diagnosed with neurofibromatosis type 1 (NF1), a genetic disorder that can cause tumors to develop along nerves. For her mother, Michelle, the diagnosis marked the beginning of a life she could never have anticipated for her daughter or their family.
Today, Everly is 2 years old and medically complex, with a care team of approximately 16 providers. Her schedule is filled with appointments, therapies, and hospital visits. Every six months, she sees specialists including genetics, ophthalmology, dentistry and neurology, in addition to the many providers involved in her ongoing care.
Shortly after Everly’s second birthday, a routine ophthalmology appointment revealed that her optic nerve appeared enlarged. An MRI of her brain showed a low-grade glioma involving the visual pathway. Because of the tumor’s effect on her vision, Everly had to begin chemotherapy to protect her sight.
Countless medical appointments have taken a toll on both Everly and Michelle. Due to her medical needs, Everly has become a regular patient. Michelle even remarked, “Everybody knows her name.” Everly is also known at her doctor’s office for being the most stylish- always showing up in adorable outfits and complimenting bows.
For Michelle, keeping up with Everly’s treatment and care has meant having to leave her job as a special education teacher. As her FMLA benefits have now been depleted, this leaves Everly’s father and Michelle’s partner, Davin, as the family’s sole earner.
Reduced income and increased expenses caused the financial strain to grow alongside Everly’s medical needs. Michelle described this strain as mentally exhausting. “Our weeks are filled with therapy, specialist appointments, hospital days, and recovery days. The financial strain is immense — her medical care, travel, parking, childcare gaps, utilities, and household expenses have all increased while our income has decreased.”
Davin has even taken on additional jobs, such as plowing in the winters, to help keep the family financially afloat.
A $700 contribution from the Joe Andruzzi Foundation (JAF) toward the family’s mortgage provided more than just financial assistance. It gave Michelle and Davin some breathing room during a time when every dollar matters.
The Food Security Program gave the family something further: a chance to feel normal. They used the Market Basket gift card to celebrate the Fourth of July with a family cookout. For one day, Michelle says, they could simply enjoy being together without worrying about how they would make ends meet.
“Things like that are so life-changing when you’re in these awful financial situations.” Michelle says.
The support has extended beyond the Foundation’s programs. While looking on JAF’s Universal Community Oncology Resource Network (UniCORN) site, she came across KDL Aesthetics.
Michelle was able to reach out to Lynn, a licensed aesthetician and the founder of KDL aesthetics. KDL Aesthetics specializes in oncology aesthetic services designed to support the unique skin health and emotional wellness needs of clients undergoing or recovering from cancer treatment. As Lynn’s family has also been touched with cancer, she knows the importance of supporting caregivers as well.
Michelle felt as if she could finally take an hour for herself and take care of herself. She was able to feel seen and connect with another caregiver she says she might never have discovered without UniCORN for “the best facial of her life.”
When asked to describe the impact JAF had on their family, Michelle said, “It hasn’t just ended with giving our family a donation. We feel a part of it. When you crave community and relationships, knowing the support does not end with the application means a lot.”
That sense of community has inspired Michelle to think about how she can also give back. Michelle has built a community of her own, sharing Everly’s journey through “Everly’s Entourage” on social media. Michelle has also been thinking about eventually turning this community into her own nonprofit to help other families who face similar challenges. “This has inspired me to want to give back,” Michelle says. “You’re changing people’s lives.”
