By JEFF MOSIER
VIEW STAFF WRITER, Green Valley Henderson VIEW
At birth, Hannah Ostrea was given nine months to live. Then, 18 months. At 2 years old, her prognosis is unknown.
She has Gaucher’s disease (pronounced go-shay’s), which prevents her body from producing an enzyme to break down fat. She could die from the condition but not before her family does all it can to raise awareness.
Hannah’s brother, Ethan, is a fourth-grader at Vanderburg Elementary School, 2040 Desert Shadow Trail, and her sister, Abigail, is in first grade there. Along with their 850 classmates, they spent the last hour of school Feb. 25 making bracelets and ribbons to be sent to families across the country with children who are battling rare diseases such as Gaucher’s disease.
The bracelets and ribbons include small cards with personalized messages from the students. The beads were donated by Bead Jungle, 1550 W. Horizon Ridge Parkway, Suite G.
The event was held in honor of World Rare Disease Day, which was Feb. 28. Because school was closed that Monday, students recognized it the Friday before.
The bracelets are part of the Global Genes Project’s 7000 Bracelets for Hope campaign. The 7,000 bracelets each represent one known rare disease that generally affects fewer than 200,000 people.
Principal Catherine Maggiore met with Hannah’s mom, Carrie Ostrea, about a week earlier to arrange the event.
“I think it’s a great lesson to teach children,” said Maggiore. “Not only are we doing a wonderful thing for this family, but it’s also teaching our children about community service.
“This was really just allowing our students to show families with children that are fighting rare diseases that there’s someone out there thinking of them,” she said.
Carrie Ostrea and her husband, Robert, received two bracelets in January made by children in other parts of the country.
“It meant a lot to us,” said Carrie Ostrea, “that somebody took their time to make a gorgeous bracelet and said, ‘You’re not alone.’ “
Hannah is one of about 50 children in the United States and 300 worldwide who have Gaucher’s disease. She makes biweekly visits to pediatrician Dr. Jonathan Bernstein, whom the Ostreas call a godsend, at the Children’s Specialty Center of Nevada, 3121 S. Maryland Parkway.
Intravenous treatments remove waste from her spleen, liver and other body parts to keep them from growing to the size of bowling balls.
Hannah’s Gaucher’s disease is rarer than most. She has a type 2-3 hybrid of the disease and exhibits symptoms more commonly related to Parkinson’s disease, to which it is genetically linked.
She’s one of about 5 percent of infected children with a neurodegenerative form of Gaucher’s disease.
She’s completely nonverbal and continues to lose motor skills. She used to be able to play with LEGOs with Ethan and Abigail but can no longer grip them.
She is, however, up on the latest technology.
“She has an iPad,” said Carrie Ostrea. “There are a lot of special-needs apps. She can hit things on the screen, so (she) can interact with something.”
Her brother made the mistake of playing with it once. Hannah crawled over to him — she can crawl about two feet at a time — and knocked it out of his hands.
“She loves her iPad,” said Robert Ostrea. “She doesn’t like anybody playing with her iPad.”
The Ostreas receive about 50 hours a week in nursing help, which they said is a necessity.
Hannah routinely knocks out her tracheal tube or will have breath-holding spells. She also must receive food through a naval tube.
The Ostreas said that because it’s such a rare disease, a support system is almost nonexistent, save for Bernstein and the Children’s Specialty Center of Nevada.
The oldest living person with Hannah’s type of Gaucher’s disease is 27, the Ostreas said. And they hang onto hope because of it.
“I’m realistic,” said Carrie Ostrea. “We know there’s not going to be a cure in her lifetime or our lifetime, probably.
“We need to find a way to start raising money to research drugs that might be able to help and let her brother and sister dote on her a little longer. She’s worth it.”
Carrie Ostrea keeps a blog of Hannah’s life at littlemisshannah.com.
For more information about the Global Genes Project’s 7000 Bracelets for Hope campaign, visit globalgenesproject.org.
Contact View education reporter Jeff Mosier at firstname.lastname@example.org or 224-5524.