MEET ELLIANA
Faithful friend & supporter,
I hope this letter finds you well and filled with the warmth that comes from knowing your generosity has made a profound impact on the lives of those we serve. As we approach the end of another remarkable year at Sunshine School & Development Center, I am eager to share a touching story with you – a story that exemplifies the power of compassion, community, and your unwavering support towards our mission.
Elliana is five years old with a larger-than-life personality and a love for music and dancing. Sunshine School first welcomed Elliana and her family in October 2022.
Elliana was born with an extremely rare disease, Noonan syndrome-like disorder with loose anagen hair (NSLH1). This is a rare mutation in her SHOC2 gene — a gene affecting every part of her body from physical to neurological.
While this one-in-million gene mutation can explain the reason for all of Elliana’s conditions and struggles, her family didn’t know about the SHOC2 mutation until after she was born. At just nine days old, Elliana was flown to Little Rock due to a narrowing in her heart. She also had struggles breathing and eating. After lifesaving heart surgery at two weeks old, multiple complications arose like fluid in her lungs and paralysis in her vocal cords. These complications lead to Elliana being intubated and tube fed.
“Those first few months of her life were really just a lot,” Elliana's mother, Taccy said. “It was a difficult time, she really struggled to thrive. We just put all our efforts into everything we could with her.”
At 12 months old, Elliana was delayed developmentally — she was not crawling, walking, talking, or eating. She continued to see countless doctors, including neurologists for some tumor-like symptoms in her brain. After a diagnosis of craniosynostosis, a condition affecting the growth pattern of Elliana’s skull, she was scheduled for surgery to give her brain space to grow.
Just two days before her surgery and at 18 months old, the family received the news of Elliana’s very rare SHOC2 gene mutation, giving them answers to many questions about Elliana’s health. Unfortunately, even with diagnosis, there are still questions about how this condition will affect Elliana’s development in the future.
“It’s hard to know how this will affect the rest of her life,” Taccy said. “SHOC2 is something that hasn’t been known about for long and there is not a lot of research for it. The genetics counselor said Elliana is the first case seen in Arkansas. One in a million.”
In the time after Elliana’s surgery and diagnosis, she has seen improvement in her quality of life and development. Elliana was receiving in-home therapy when her family was introduced to Ryan Sheedy, Sunshine School parent and board member. Ryan’s son, Reynolds, was seeing the same physical therapist as Elliana. Reynolds lives with Costello Syndrome, a rare genetic mutation affecting many parts of his body and development, much like Elliana. This is where Elliana’s family first found out about Sunshine School & Development Center. Ryan was able to help Taccy and her husband, Kyle, through the process and eased their minds about how everything works at Sunshine School.
“Being a parent and a caregiver to a child who is medically complex, especially one with a rare disease, can be tough to navigate alone,” Ryan said. “We’re so lucky to be able to meet families like Elliana’s and connect them with the premier services Sunshine School offers that have helped Elliana, Reynolds, and countless other children and adults who deserve to be included. We’re all in this together.”
In addition to Sunshine School’s therapeutic and educational services, we strive to create a community for our students, clients, and their families to help them navigate disability and connect with others living in similar situations.
“Overall, Elliana has improved drastically over the past year,” Taccy said. “She is talking so much more; she’s even showing interest in trying new foods. She’s gotten stronger walking, is close to running, and has just grown exponentially. It’s so exciting.”
Elliana has been enrolled in our Early Intervention Day Treatment (EIDT) program for just over a year now and receives services daily, including our specialized nursing team facilitating and administering her tube feeding. Spending multiple hours a week in our speech, physical, and occupational therapy programs, Elliana's progress is inspiring.
"Elliana has been such a joy to work with over the years & see all her progress,” occupational therapist Lindsay Welborn said. “She went from working on the strength to lift and turn her head to now pushing little shopping carts full of weighted balls all over the school!"
It was through your support that Sunshine School & Development Center was able to step in and make a significant impact on Elliana’s life. In the spirit of reflection, we have seen remarkable strides over the last year in the lives of all of those we serve touched by disability. Elliana is just one of many served each day.
As we approach the end of the year, we are reaching out to our valued supporters with a humble request for your continued support. The challenges faced by families like Elliana’s persist, and there are many more individuals waiting for the same helping hand. We ask you to give to Sunshine School & Development Center one more time this year, as it fuels our ability to expand our reach, improve our programs, and touch the lives of even more children and families in need.
Your donations have facilitated access to specialized therapies, adaptive equipment, and a support network that understands the unique needs of families like Elliana’s. Your generosity has been instrumental in shattering limitations and enabling people touched by disability to embark on a transformative journey marked by progress and empowerment.
Thank you immensely for joining us to create lasting change and foster a world where every individual, regardless of their abilities, can reach their full potential. I can’t wait to share more successes with you in the years to come.
With heartfelt gratitude,
Jarrod Reeves, CEO
