About Danielle
Hi, I’m Braylee Jevnick, a junior at Xavier College Prep in Phoenix, AZ. I’m passionate about making a difference for people with Special Needs like my Aunt Danielle. I created this diary to raise awareness, tell her story, and hopefully raise funds for her group home as well as other organizations that support the special needs community.
Danielle, or "Auntie Sissy" as my family calls her, was born with severe Down Syndrome and Turner Syndrome. Her real age is 53 years old; however, Danielle’s mental development is closer to that of a young child. She grew up in Minnesota living with her family like every other child does, but after graduating high school and turning 25, she moved into a group home that provides 24-hour care.
Every summer, my family makes it a priority to visit her, and these visits have helped shape who I am today and my desire to help others relate. Some of her favorite things are McDonald’s ice cream cones, playing with puzzles, rocking on the swing, and singing songs. These moments have created lasting memories.
As I’ve grown older, I’ve come to realize how truly special Danielle is—not just because of the bond we share, but because of her unique personality. She is a very routine-oriented person; she loves her daily schedule and gains comfort from the predictability of her life.
Too often, people assume that individuals with special needs are unintelligent or emotionless. I’ve learned that people like Danielle experience a full range of emotions—frustration, joy, excitement, fear, sadness, and pain—just like anyone else. They may express themselves differently, but their emotions are just as real. They are also very smart, intuitive, and their disabilities range from mild to severe.
I’ve also had the privilege of watching my mom and grandparents interact with Danielle, and their love and patience have taught me so much. They encourage her to do many things for herself. They sing nursery rhymes, count with her, and repeat her favorite phrases like, “pretty girls always smile,” which makes her so happy. If you ever want to see Danielle light up, take her on a boat ride—she truly loves the water and enjoys taking rides! She gets extra excited to ride in a boat, car, or even a chair lift!
Danielle has a strong personality (some might even call it stubborn), but it’s one of the things that makes her uniquely her! She may not speak like the rest of us, but she most definitely makes her feelings known.
In this diary (Danielle’s Diary), I hope to give her a voice—and a voice to others like her.
Join me on this journey—keep reading, and together we can make a difference!
Meet Danielle’s Parents
Hello, I’m Char, and my husband Tom and I are the proud parents of Danielle. Raising a daughter with special needs has been a journey filled with challenges, but also with moments of incredible joy and always unconditional love.
Danielle was born at just four pounds, four ounces—so small and fragile. Instead of placing her in my arms, the doctors took her away. No explanations. No reassurance. All they told me was, “She has ten fingers and ten toes.” For 25 long days, we waited to hold her. She was kept in an incubator, struggling to maintain her weight. When we were finally able to hold her, we knew one thing for sure: she was a fighter. At first, doctors didn’t tell us much, but as she grew, it became clear that she wasn’t developing at the same pace as other children. At three months old, she was already falling behind. By one year old, she was six months behind. Eventually, we learned that she had Turner Syndrome, which affects growth and development. The doctors told us she may never sit up, crawl, or walk. Some Doctors said she may not live past 5 years old but they were wrong. With time and love, Danielle did learn to walk—thanks to her grandpa, who would place her tiny feet on top of his and sing to her as they moved across the house together. She wasn’t potty-trained until she was ten, but every small step forward was a victory.
Back then, resources for children with disabilities were hard to find. It wasn’t until Danielle was two and a half that we learned about programs for kids like her. She started in a tiny church program with just one or two rooms, then moved from school to school wherever there was empty classroom space throughout her life. The state helped fund some of it, but options were limited. When Danielle turned 18, we applied for a waiver program that would help fund long-term care but the waiting list was long. It wasn’t until she was 25 that we finally got a waiver, and even then, we had only 24 hours to decide whether to place her in a group home.
Letting her go was one of the hardest things we’ve ever done but we knew it was the best decision for her future. She needed a day to day routine. We found a place close to our home that provided stability and caregivers she and we could trust. For years, she was surrounded by wonderful staff—some even treated her like family. Unfortunately, more recently, we went through some caregivers who didn’t fulfill their responsibilities and didn’t provide the level of care Danielle deserves. It was particularly devastating when one under trained staff member neglected Danielle’s care, causing her to lose ten pounds in just a few weeks. We fought to ensure Danielle received proper care, and as a result that staff member was removed. The neglect was unacceptable, but the experience helped us realize how crucial it is for Danielle and others like her to have caregivers who were not only trained but truly committed to their well-being.
After that incident, more staffing shortages caused Danielle’s group home to close down. She moved to a new group home nearby. Danielle’s health didn’t improve. Things continued to worsen, and then COVID-19 hit, creating even more challenges. Staffing shortages became severe, and the new group home couldn’t provide the care Danielle needed. She wasn’t being fed enough or the right foods, and as a result, she lost another eight pounds. It was a terrifying time for us as parents. Danielle became even more frail, and she needed to go to the hospital multiple times. Whenever Danielle was sick, it was especially frightening, because her already fragile body was prone to complications, and every illness put her at risk. Watching her struggle to stay healthy and being forced to go to the hospital for care was absolutely heartbreaking.
For 72 days, Danielle stayed with us at home because it wasn’t safe for her to return to the group home. During that time, we were blessed to get her into our family clinic and meet her primary care doctor, who was absolutely incredible. This doctor took the time to truly listen to our concerns for Danielle as if she were his own. His compassion, expertise, and support made a world of difference as we worked to help Danielle regain her strength. We felt so grateful to have a doctor who genuinely cared about her and was willing to do whatever it took to help her.
It’s so important for people with special needs to have a strong support system—whether that’s family, caregivers, or anyone who truly cares and is committed to their well-being. While there are many challenges within the system and not all caregivers meet the mark, we’ve been fortunate to find those who are genuinely dedicated and make a real difference in Danielle’s life.
After her old group home closed, we were so fortunate to meet Andrea, who became the advisor for Danielle’s new group home. Andrea was one of the caregivers who truly understood Danielle’s needs and fought for her, helping her get back to stable health. Andrea found good staff and the new home has shown great improvement. We’ll always be grateful for her dedication.
Eventually, Andrea was promoted, Lovia took over, and she’s been a true blessing to Danielle. Lovia’s compassion, consistency, and skill have provided Danielle with the stability and care she needs. Danielle has formed a special bond with her and we are grateful to have her in our lives.
Slowly, Danielle has made progress, but there are still many challenges ahead. Her journey is ongoing, and we continue to work hard to make sure she gets the care and support she needs.
Raising Danielle has taught us that love, persistence, and advocacy make all the difference. The system still has flaws—lack of funding, long waitlists, and not enough trained staff. However, we’ve also seen progress—more acceptance, better programs, and more opportunities for individuals with special needs. Most importantly, we’ve learned that Danielle is stronger than anyone expected. She has taught us patience, resilience, and a joy that can’t be put into words. To anyone who doesn’t understand individuals with disabilities, we say this: Take the time to know them as individuals. They are smart, capable, loving, and deserve respect like all people.
Danielle is our greatest blessing, and we wouldn’t change a thing.
Meet Lovia
Lovia grew up in Ghana, Africa, and moved to the United States in 2011 to pursue new opportunities. Her journey into caregiving wasn’t a straightforward path—she first studied medicine, but quickly realized that working with blood wasn’t for her. She explored nursing, business administration, and medical office work before ultimately finding her passion in caring for individuals with special needs. Lovia had to push herself through school and work hard to establish her career. Despite the challenges, she persevered, driven by a deep sense of purpose.
“I never worked in my life until I was 26,” she says. “I had to force my parents to let me work. I put myself in school because I didn’t have the money for an apartment. I had to make it happen.”
Lovia’s experience in the healthcare field is vast. She has worked in group homes and facilities that support individuals with disabilities, developing skills in patient care, communication, and understanding different needs. She believes that caregiving is more than a job—it’s a calling.
One of the biggest challenges in her field is finding good, reliable staff who are passionate about caring for individuals with disabilities. Lovia emphasizes how important it is to have the right people in these roles, ensuring that every individual gets the respect and care they deserve.
Danielle and Lovia share a special bond. Lovia has an intuitive understanding of Danielle’s needs—whether it’s knowing when she needs to eat and drink or even when she's being stubborn. Lovia knows that Danielle requires extra care when she is sick or extra praise when she is showing off. Over time, Danielle has developed a deep trust in Lovia, you can see this when Danielle gives her a big bear hug every time she's dropped back off at the group home.
“Danielle is so smart,” Lovia says with a smile. She explains that people don’t always realize how much she knows, but Danielle is even smarter than us in ways we don’t expect.
Lovia also reflects on how individuals with disabilities are treated differently around the world. In Ghana, for example, there are very few government-supported programs for individuals with special needs. Many families struggle to care for their loved ones because resources are limited, and in some cases, people with disabilities are abandoned.
“In the U.S., things have improved so much,” she says. “People are more accepting now. They ask questions, they offer to help. It’s not perfect, but it’s better than before.”
Lovia’s dedication to Danielle and others like her is nothing short of inspiring. She treats her work with dignity, respect, and love, ensuring that Danielle gets the best care possible.
“She has to trust you,” Lovia says. “And once she does, she knows she’s safe. Lovia is more than just a caregiver—she’s family. Our family is forever grateful to have her in Danielle’s life.
