Early Life and Struggles
Rowan’s life has been filled with challenges. In 2022, when she was just 3 years old, a woman on social media saw her photo and contacted her parents, suggesting that Rowan might be suffering from a rare disease called Sanfilippo syndrome.
The parents, alarmed by the suggestion, researched the condition on the Sanfilippo Syndrome Foundation website. Upon reading the symptoms listed, they felt their world was crashing down. The symptoms matched Rowan’s condition.
Diagnosis of Sanfilippo Syndrome
The diagnosis was confirmed when Rowan was tested—she had Sanfilippo syndrome type A. This condition, also known as mucopolysaccharidosis type III, is a metabolic disorder and a rare genetic disease that affects only a few thousand people worldwide. The disease leads to the body’s inability to break down certain molecules, causing them to accumulate, particularly in the brain. 
This genetic disorder is inherited when both parents pass on a defective gene. Often misdiagnosed as ADHD or autism, Sanfilippo syndrome causes cognitive and behavioral issues. The syndrome is sometimes referred to as “children’s Alzheimer’s” because of its similar symptoms, such as memory loss and cognitive decline, which typically start in early childhood.
Impact and Symptoms
Sanfilippo syndrome leads to severe developmental delays, including language delays, hyperactivity, irritability, and the inability to walk or feed oneself. It also causes sleep problems, digestive issues, and frequent ear and respiratory infections. As the disease progresses, it leads to seizures, motor problems, and chronic pain. Sadly, most children with this condition pass away in their teenage years, with no current cure.
Parents’ Hope Amidst Despair
Rowan’s parents were heartbroken by the diagnosis but found hope in their daughter’s strength. Rowan’s love for her family, her willingness to engage with others, and her spirited personality kept their spirits alive.
“She is so full of energy, loves interacting with people, and adores her siblings,” said her parents. “Her hugs are the warmest, and she loves to clap other people’s backs. She enjoys singing ‘Wheels on the Bus’ and outdoor activities, especially with her family.”
Even though their hearts ache knowing that one day Rowan will no longer be with them, they are determined to give her the best life possible.
Struggles of Raising Rowan
Raising a child with this condition is incredibly difficult. Rowan’s parents explained that she is often hyperactive and stubborn, constantly running around and requiring constant supervision. Unfortunately, she lacks spatial awareness and coordination, making it easy for her to fall and injure herself.
Despite these challenges, Rowan’s parents remain dedicated. They have worked hard to help their older children understand Rowan’s condition, ensuring they care for her deeply.
Clinical Trials and Community Support
Rowan’s parents discovered a clinical trial for Sanfilippo syndrome in North Carolina. They decided to participate, despite the exhausting process. “Only about 12 children in the entire U.S. receive this special treatment,” her parents said. “We drive there in the afternoon, then spend the entire next day from 7 AM to 5 PM receiving treatment, and then drive back home.”
While the results are uncertain, this treatment has helped alleviate some of Rowan’s symptoms, and her parents remain hopeful that it will extend her life.
Giving Back
In response to Rowan’s diagnosis, her parents established the East Tennessee Rowan Ash Tree Foundation, a charity dedicated to raising funds for research into a cure for Sanfilippo syndrome and supporting other families facing similar struggles.
“The support we’ve received from friends and people from all over has been overwhelming,” they said. “We are incredibly grateful to have so many generous and capable people around us, supporting us every step of the way.”
Hope for a Cure
Now, the family’s hopes rest with medical advancements that could provide a cure for Sanfilippo syndrome. They dream of a future where Rowan and children like her can grow up without suffering.
Rowan’s journey has been full of hardship, but her parents continue to find strength in her resilience. They hope for a cure that could give her a brighter, pain-free future.
