Here, children in wheelchairs can go to dances without wondering if anyone will scrutinize their moves.
Here, children with facial tumors can take jewelry-making classes, knowing their colorful creations are all that will draw stares.
Here, Noah doesn’t have to explain why she gets tired so often.
“Our situation is normal here,” she tells me. “Unlike out there.”
Out there, she has to brace every time she walks into a restaurant because she knows someone will ask her if she wants a children’s menu.
“Sometimes they won’t even ask and they will just hand me crayons and a kid’s menu,” she says. She understands why strangers mistake her for someone half her age. She is 4-foot-9 with an unblemished round face. She looks young, not sick. Still, that assumption bothers her enough that on her 21st birthday, after a waiter tossed her that question during a lunch with her parents, she ordered a beer.
The children and the young adults who come to stay at the Inn — which is located on the campus of the National Institutes of Health — all have stories of “here” versus “out there.” Most have spent years going to doctors and specialists and more specialists. And some, like Noah, have spent their entire lives doing so.
The Inn provides housing for the families of young people who are participating in clinical trials and groundbreaking studies, which means many of them are desperate for help that other doctors haven’t yet been able to provide and answers that science hasn’t yet been able to reveal.
Most of those young people have rare conditions. Noah has two “ultrarare” conditions. That makes her a rarity among rarities.
That also makes her the perfect person to stand on a stage and speak about what it feels like to occupy that lonely space. This year, Noah was asked to share her story for a live-streamed event that NIH held Friday, on the eve of Rare Disease Day, which falls on the rarest date on the calendar, February 29.
When I meet her a few days before that speech, she is sitting with her parents, Gisela and Carlos Victoria, at a dining room table at the Inn. She confesses she is nervous. She is not yet certain what she will say in front of all the people who will be watching her from seats in that auditorium and computers across the country.
She will have just a few minutes to sum up her life — the childhood bullying, the constant pain, the medical unknowns — and convey how her experiences are unique to her but not rare. One out of 10 people is estimated to have a rare disease, making them common in their collectiveness.
At the Inn, Noah just has to turn her head to see that even if her medical chart is unusual, some of her struggles aren’t.
“She gets the same questions!” Noah turns to her mom at one point to say. Dinner at the Inn is communal, and Noah happens to be sitting next to a 22-year-old who had a blood disorder and appears to be about her same height. They bond over what strangers ask them. They also discover they share some interests.
“I have a lot in common with her,” Noah tells her mom. “We both watch international shows on Netflix! I’m not the only weirdo.”
When Noah starts talking about international anything — shows, languages, religions — her voice gets louder and her words come out quicker. She has studied Hinduism and Judaism. She watches Korean dramas and British television shows. She has a growing list of places across the world she hopes to visit, with England at the top.
“My dream is to one day go everywhere,” she says.
The furthest she has been able to travel so far from her home in Calvert County, Md., is Miami. Even a trip to the grocery store can leave her exhausted. Her mom says that each morning when she opens her daughter’s bedroom door, she doesn’t know whether Noah will have the energy to get up or will have to stay in bed.
Gisela was pregnant with Noah when doctors first suspected something was wrong with her. Her limbs seemed short. Then after she was born, she cried constantly.
“She was the most irritable child on the planet,” says Cynthia Tifft, a physician who worked at Children’s National Hospital when she first diagnosed Noah as a baby. Tifft is now the director of NIH’s Pediatric Undiagnosed Diseases Program.
Gisela is sitting nearby and confirms the crying: “It was 24/7, every day, for months.”
Noah was 5 months old when she was diagnosed with abetalipoproteinemia, a genetic condition that keeps the body from absorbing fats and fat-soluble vitamins. As a result, it hurt her every time she drank breast milk or normal formula.
Even now, she has to maintain a low-fat diet and take 38 pills a day to help her avoid complications from the disorder, including blindness and motor problems. She keeps those pills in a bowl at home and pops them in her mouth throughout the day like M&M’s.
Tifft describes the disease as “ultrarare” and says Noah was the youngest person at the time to receive that diagnosis. She also says “no one else in the world” has the same two ultrarare diseases as Noah.
Noah received that second diagnosis just as she was entering her teenage years. She started experiencing severe ankle and wrist pain. During a surgery on her wrist, doctors discovered tiny holes perforating the bone. Afterward, she was accepted into NIH’s Undiagnosed Diseases Program, and testing revealed she had “Desbuquois dysplasia,” which causes skeletal disorders.
There is still much her family doesn’t know about both conditions, or whether abnormalities found on other genes will reveal other issues.
That’s the thing about rare diseases — answers bring more questions. But even if doctors don’t yet know how to treat them or cure them, just naming them bring relief for families who have been on “diagnostic odysseys for years,” Tifft says.
Often, she says, she just has to say, “Hello, welcome to the NIH” and “the families just start crying.”
Noah doesn’t like to cry in public. But in the 19 years she has been participating in clinical trials at NIH, some of those days have ended with her letting tears fall in front of staff members at the Inn.
They know just when to ask, “Bad day?” she says.
They also know not to question why a 22-year-old sometimes walks around with a fraying teddy bear. She was given “Teddy” when she was 4 and the Make-A-Wish Foundation sent her to Disney World because her future was uncertain. She has since taken that bear to every medical procedure.
“We look at Teddy like, if he can make it, we can make it,” Gisela says.
Even though the Inn is on the NIH campus, it is a nonprofit that runs on donations and volunteers.
Gisela describes it a place where she feels “emotionally safe.”
Noah describes it as an escape. When she was younger, it allowed her to escape from bullying that saw girls taunt her, a boy throw a chair at her and her parents decide by fifth grade to home-school her. And now that she is older, it allows her to escape from people who ask her why she isn’t in college yet.
She has decided to follow her interests and be productive in a way that her body allows. She spends her days reading authors that range from Arthur Miller to Leo Tolstoy. She is also working on publishing a book of poems that capture what it feels like to live with rare diseases. One begins: “Resistance with each breath I take, I inhale the aroma of anguish, that covers the ocean shore.”
When she stood on that stage Friday, she talked about her poetry, the need to give voice to more rare disease patients and how giving that speech would probably leave her drained of energy, in serious pain and experiencing bouts of nausea for days.
She also told those listening about the Inn.
She described it as a rare place.
“It was a place,” she said, “where I felt accepted for who I am.”
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