Adeline (10) is proud to share her story of living with Turner syndrome with others. She also loves learning the stories of historical figures through books and shows. Pictured here at the Broadway show Hamilton!
When a child needs specialized care, finding the right provider close to home can be a challenge. For Adeline’s family, driving 200-miles through the mountains of West Virginia to get to the Akron Children’s Turner Syndrome Center isn’t always ideal so her care team utilizes MyChart, telehealth and its Mahoning Valley location to reduce the distance, but not the care, between them.
“I’d give up anything to give Adeline the best care possible so a 2-hour drive doesn’t really seem like much to us,” said Kimberly Horne, Adeline’s mom. “The peace we feel that she has providers who have the knowledge and experience to treat her condition and who take time to get to know her make the trip totally worth it.”
Turner syndrome (TS) affects about one in 2,500 girls and can cause a variety of medical and developmental problems, including short stature, loss of ovarian function, heart and kidney defects. Like many things, early detection is key to managing most symptoms.
Adeline and her parents are thankful for their care team at Akron Children’s Turner Syndrome Center and the many ways they can manage her care from home in West Virginia. Adeline pictured above with her parents and siblings, Walker, Amelia and Winslow.
For a couple years, Adeline wasn’t showing much growth at her wellness exams so her pediatrician recommended blood testing to rule out other factors that could affect height. Just before her 7th birthday, Adeline was diagnosed with TS.
Adeline’s parents searched for specialists trained specifically on her condition and found them at Akron Children’s Turner Syndrome Center. The center coordinates care and access with specialists in cardiology, endocrinology, audiology and ENT, ophthalmology and neurobehavioral health to provide comprehensive treatment for TS patients.
Part of Adeline’s care plan includes frequent blood work to check hormone levels and regular height and weight check-ins. Her Akron Children’s team is able to access these results without Adeline ever having to leave West Virginia.
Turner syndrome doesn’t get in the way of Adeline being a fierce competitor on land and in water.
“We use all forms of communication available to us to help Adeline and her family manage the many facets of TS without having to come to Ohio all the time,” said Alicia Lowes, DO, pediatric endocrinologist and director of the Turner Syndrome Center. “We utilize telehealth, phone calls and MyChart to stay informed, ask questions and keep medications and care on track. Adeline’s family is diligent in following her plan, which is helping Adeline thrive.”
Four times a year, Adeline comes to Akron Children’s for checkups with her extended team.
“Her TS team lines up all her specialty appointments for the same day at the Mahoning Valley location, which cuts 45 minutes off our drive time,” said Kimberly. “It may not seem like much, but for a busy family of 6, it makes a real difference.”
Adeline’s family is also seeing a positive difference in her health – Adeline has gone from the 3rd percentile for height in 2019 to 35th this year. While her stature is on the right path, the challenges of puberty are still on the horizon.
Less travel to appointments means more time spent at school and home for Adeline (Addie). Pictured above winning her school spelling bee (left) and earning a $500 scholarship for an essay contest she won (right)!
“Many of the things girls with TS experience are tough subjects for kids to talk about – body image, puberty and reproduction so these conversations occur at our very first appointment and are readdressed frequently at visits,” said Dr. Lowes. “We also offer speakers, conferences and support groups to help our patients stay informed and comfortable about the path ahead.”
One of these tough topics is infertility. After consulting with Dr. Lowes, Adeline’s family decided to take a proactive measure and become part of a NIH study that harvested one of Adeline’s ovaries to give her a chance at a biological child later in life.
“Adeline is an avid reader and loves learning about strong, historical women like Harriett Tubman and Sally Ride. When we spoke to her about the study, she thought it was her chance to be brave like the women she reads about,” said Andrew Horne, Adeline’s dad. “She knows there’s no guarantee it will work, but she’s excited about doing her part to help other woman and girls with TS and be a part of history.”
For more information about Akron Children’s Turner Syndrome Center, contact us at 330-543-3276.
