Mirah Henry stood in front of her fellow students and slowly explained how she learned she had a rare disease. She was a bit shy at first, but she had an easy audience.
Her 20 or so classmates stared back, captivated. They had all seen Amirah’s condition deteriorate but did not quite understand what happened— how she had gone from a 7-year-old who loved to run and skip to a girl who could barely move.
“It felt hard to walk,” Amirah said.
Amirah’s mother, Nadia Henry, thought it would be a good idea to work with Spark Academy’s second grade teacher, Lindsey Morgan, to explain to the children what rare diseases are. They used Rare Disease Day as their opportunity.
“Who can tell me about Rare Disease Day?” Morgan asked her students in the school in Newark.
A dozen tiny hands shot up.
The kids, sitting at the front of the classroom, vied to be the first to answer. They took turns explaining what “rare” meant and how a disease can make a person very sick.
Rare Disease Day began in 2008 as an attempt to raise awareness about rare diseases and spur new research for diagnosis and treatment. A rare disease is usually considered to affect fewer than 200,000 in the United States, according to the National Institutes of Health. There are about 7,000 rare diseases identified in the United States, 80 percent of which are genetic. The NIH estimates about half of all rare diseases affect children.
Amirah is one of those children. Just before school started this year, her mother noticed she was having trouble walking. Soon the strength in her legs was gone. Henry took her daughter to three doctors who could not diagnose what was happening to her daughter.
“Why is it a challenge for people with a rare disease?” Morgan asked her students.
The tiny hands were back in the air.
Because the diseases are rare, they are hard to diagnose.
“People who are affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family,” state Health Commissioner Mary O’Dowd said in an e-mail.
Amirah was taken to the Children’s Hospital of Philadelphia, where she learned she had Guillain–Barré syndrome, a disease in which the immune system attacks the body’s nerve cells, causing muscle weakness and sometimes paralysis.
Between 3,000 and 6,000 people develop the disease each year, according to the U.S. Centers for Disease Control and Prevention.
Amirah spent Christmas break in the hospital receiving treatment. There is no cure but it is treatable, and Amirah is almost back to her old self, her mother said. She is again able to walk, run, jump, play, to be a kid again.
“That makes me feel happy,” she said Thursday, flashing a toothy grin, as she explained how she loves to skip outside her school.
Her charter-school classmates were thrilled, too.
Damaje Smith, seven years old, said he was happy Amirah could again play freeze tag.
Rare Disease Day is technically Feb. 29, chosen for its symbolism because that day is also rare. On non-leap years, it is celebrated on Feb. 28 or March 1.
“Rare Disease Day is a time to help build public awareness for rare diseases, and it’s also a time to build greater awareness that more must be done in the public and private sector to find cures for rare diseases,” said U.S. Rep Leonard Lance (R-7th Dist.), co-chair of the Congressional Rare Disease Caucus, which works to secure research funding for rare diseases.
That may become more difficult. The NIH is scheduled to lose $2.5 billion, or 8 percent of its budget, because of the automatic spending cuts known as sequestration set to take place today. Lance said he hopes the cuts can be avoided.
“An across-the-board cut to important federal health care departments like the NIH is one of the reasons why I have twice voted for House-passed measures to replace the automatic cut with more targeted spending reductions and reforms,” Lance said.