Visible Together: Jenn’s Birthday Wish
Before hereditary hemorrhagic telangiectasia (HHT), Barrett was simply Barrett.
He was the unexpected joy who entered Jenn Doughty’s life when she learned she was pregnant at 15 weeks. He was happy, giggly, full of energy, and just the right amount of mischievous. He brought laughter into their home in the way only a child can—loudly, completely, and without warning.
At four years old, Barrett was all personality. He was silly and bright and full of life.
Then, one ordinary morning, everything changed.
Jenn’s husband was preparing to leave for a four-day flight assignment. Jenn was getting ready for a business trip to Washington, DC. It was the kind of busy family morning so many of us know well—bags being packed, schedules being checked, everyone trying to get out the door.
Barrett wandered into Jenn’s bathroom while she was getting ready.
“Mommy, I feel so silly today!” he said, wiggling around.
Jenn laughed. It felt like a normal moment. A sweet, funny, very Barrett moment.
Then he stopped. “Mommy, I don’t feel good.”
Moments later, he began vomiting.
At first, Jenn thought what many parents might think in the middle of travel, work, and a dozen competing responsibilities—of course he gets sick today.
But when the vomiting stopped, something still felt wrong.
Barrett was not responding like himself. He seemed distant and foggy. Disconnected. Jenn and her husband knew this was more than a stomach bug. They rushed him to the emergency room.
After hearing what had happened, the doctor ordered a CT scan. Jenn tried to convince herself it was just caution. Then the doctor came back and told them their son had an abnormality in his brain. An ambulance was already on the way to take Barrett to the children’s hospital.
Jenn wanted so badly to believe everything would be okay. But the fear was already there.
More testing showed that Barrett had an arteriovenous malformation, or AVM, in his brain. He needed surgery as soon as it could be scheduled.
Jenn remembers gripping her husband’s hand and asking the question no parent should ever have to ask: “Doctor, is my son going to die?”
Barrett was four years old.
Thankfully, after a 10-hour craniotomy, Barrett came out of surgery successfully. His family could breathe again—but only for a moment.
After surgery, the neurosurgeon mentioned HHT for the first time and recommended genetic testing for their family, including Barrett’s older sister, Rowan.
That fear came rushing back. Could Rowan have this too? Could Jenn’s husband?
The results confirmed what no family wants to hear: Barrett, Rowan, and Jenn’s husband all have hereditary hemorrhagic telangiectasia.
In one moment, HHT went from something Jenn had never heard of to something that touched the three people she loved most in the world.
More scans and appointments followed.
Rowan was found to have micro-AVMs in her brain, pulmonary AVMs, and concerns involving her liver. Barrett was found to have pulmonary AVMs and later developed two additional brain AVMs that required gamma knife treatment. Jenn’s husband, remarkably, had no detectable AVMs anywhere in his body.
That is one of the hardest parts of HHT. Even within one family, it can look completely different from person to person.
For one person, it may mean few or no visible symptoms. For another, it may mean serious complications in childhood. For families like the Doughtys, it means learning to live with uncertainty while doing everything possible to stay ahead of the disease.
Today, their family’s life with HHT includes frequent nosebleeds, ongoing monitoring, specialist visits, and more hospital time than any family would ever choose.
Some days, Jenn says, they hold tightly to joy. Other days, they cling to it with only the tips of their fingers. But they keep going. They keep hoping.
They hope for better treatments. They hope for new discoveries. They hope for earlier diagnosis. They hope for a future where HHT is understood sooner, treated better, and no longer discovered through crisis.
During HHT Awareness Month, Cure HHT’s Visible Together campaign is shining a light on the families, patients, caregivers, physicians, and researchers who are working toward that future. Together, we are making the invisible parts of HHT seen. We are raising awareness so more families can find answers sooner. And we are fueling the research and care that can change what comes next.
For Jenn, June 23 will always be more than her birthday. It is a reminder of what her family has survived. It is a day to honor Barrett and Rowan’s courage. And it is a chance to make the same wish, again and again, until it comes true.
That one day, no parent will have to ask if their child is going to die because of HHT.
Your gift to Cure HHT helps bring that day closer.
Together, we are Visible Together.
And together, we can build a future where Jenn’s birthday wish comes true.
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.