Visible Together: The Strength of Team Ella
June is HHT Awareness Month. But for Jelina’s family, it is a month they never knew existed until Ella’s diagnosis changed everything.
For years, they had been searching for answers. Ella had muscle weakness and hypotonia, and her family wanted to understand why certain things seemed harder for her. They pursued genetic testing hoping it would help explain one part of Ella’s story.
Instead, the results revealed something they had not been looking for at all.
Hereditary Hemorrhagic Telangiectasia. HHT.
In an instant, her family was pulled into the world so many rare disease families know too well: new specialists, new appointments, new testing, new questions, and a diagnosis that seemed to arrive with more uncertainty than answers.
What did this mean for Ella’s future? What would her care look like? What else did they need to know? What had they missed simply because no one knew to look for HHT?
It was overwhelming. It was scary. And it was a lot for any family to carry. However, through every appointment, every procedure, every test, and every diagnosis, Ella has continued to be Ella.
She smiles. She plays. She learns. She lights up the rooms she enters. She faces challenges with a kind of bravery that has become a daily source of strength for everyone who loves her. That is why her family calls themselves, Team Ella.
For Jelina’s family, that team has included Ella’s pediatrician and the care team at Nicklaus Children’s Hospital. It has included geneticists who took the time to personally call Ella’s pediatrician, explain the diagnosis, and help build a plan for her care.
Ella’s story is also a reminder of how many families are still searching for answers. How many people may be living with HHT without knowing it. How many diagnoses may be missed, delayed, or discovered only by chance.
Earlier diagnosis can save lives. Education can help families find answers sooner. And sharing stories like Ella’s can help another parent, another patient, another family recognize the signs and seek the care they need.
If Ella’s story moved you, please consider making a gift to the Visible Together campaign today. Your support helps Cure HHT advance the research, education, advocacy, and patient support that families like Ella’s are counting on.
This HHT Awareness Month, we are Visible Together because visibility changes what is possible.
Your gift to Cure HHT helps support the education, advocacy, research, and expert care that move this community forward. It helps more providers understand HHT. It helps more patients find answers. It helps build a future where rare disease care is not defined by isolation, but by connection, knowledge, and hope. Thanks to a generous group of donors, a significant portion of gifts made during HHT Awareness Month will be matched.