One Family Makes Big Impact For Kids With Rare Disorders
Families with a child affected by a rare disorder can feel isolated and uncertain of where to turn. Parents like Prasadarao Kondapalli, MD, and his wife, Nirmala, have a deep understanding of the fear and frustration that often accompany caring for a child with a condition that friends and loved ones have never even heard of.
After losing their daughter, Vinaya, to a rare disorder called Rett syndrome, the Kondapallis knew they wanted to do something big—something to help others going through a similar struggle.
Rett syndrome is a neurological disorder that affects females exclusively and is caused by mutations of the X chromosome on a gene called MECP2. It can lead to a variety of difficulties, such as loss of communication skills, uncontrolled hand movements, breathing and swallowing difficulties, scoliosis, mobility problems and more.
Most people with Rett syndrome will be dependent on 24-hour care throughout their lives. And some, like Vinaya, face life-threatening complications. These include issues such as heart arrhythmias, pneumonia and epilepsy.
“The MECP2 protein is ubiquitous throughout the body, particularly in the brain,” says Shannon Standridge, DO, MPH, director of our Rett Syndrome Clinic. “When the protein function is disrupted as it is in Rett syndrome, multiple organ systems can be affected, leading to multiple different health issues that evolve over a patient’s lifetime.”
Based in Cleveland, the Kondapallis were looking for a way to support the best and brightest minds dedicated to helping families impacted by Rett syndrome and related spectrum disorders. Their search eventually led them to Cincinnati Children’s, where our expert researchers and caregivers are working together to discover more effective treatments and improve quality of life for children with the condition.
Recently, the Kondapallis gave a generous gift of $1 million to support work being done at our clinic—now aptly named the Vinaya Rett Syndrome and Related Spectrum Disorders Clinic.
“The renaming of our clinic represents the personalized care and support we provide,” says Dr. Standridge. “We’re honoring all of our patients and families through Vinaya and her family’s generosity—and I look forward to partnering with the Kondapallis in improving the lives of those who rely on us.”
Our partnership with the Kondapalli family will enable us to hire a clinical and research coordinator, acquire communication devices for patients, build and maintain a clinical repository, synthesize dietary data and provide informational resources to new patients. Their support will also provide help to patient-families who need assistance with expenses like travel, lodging and meals.
“No matter the severity of the condition, we’re here to help each child and their family with a personalized care plan that improves their day-to-day. And while we don’t have a cure yet, what gives us hope is the research being done,” says Dr. Standridge. “The gift from the Kondapalli family will help make us more successful on both fronts.”
