Plainfield toddler with rare disease, family face long journey
By Susan DeMar Lafferty firstname.lastname@example.org December 30, 2012 6:16PM
Two-year-old Noah Galloy (center) listens for his brother Brayden's heart as their parents Ryan (left) and Jenn (top right) watch in their residence Wednesday, Dec. 26, 2012, in Plainfield. Noah, who has a rare genetic disease, is going to Germany for a stem cell transplant. | Matthew Grotto~Sun-Times Media
Fundraiser for Noah Galloy
Where: Bourbon Street, 3359 W. 115th St., Merrionette Park
What: Buffet from 1:30 to 3:30 p.m., DJ, live entertainment, children’s activities, silent auction and raffles.
Tickets: $25 for adults, $10 for kids ages 6 to 12
Donations: Team Noah, c/o Archer Bank, 3435 W. 111th St., Chicago, 60655.
More information: On Facebook at teamnoah.weebly.com
Updated: February 1, 2013 6:19AM
Like a typical 2-year-old, Noah Galloy bounces around his family’s Plainfield home — driving his new “Toy Story” car from Santa Claus, playing with his older brother Brayden, or searching for his favored Winnie the Pooh stuffed toy.
Despite the intravenous ports tucked under his long-sleeved shirt, or the enlarged lymph nodes in his neck, Noah appears to be full of life and energy. He is oblivious to the fact that his family is settling in for his long journey ahead.
“He looks so good right now, but he will be so sick,” his mother, Jenn Galloy said.
In mid-January — just a month shy of his third birthday — Noah is expected to undergo a stem cell transplant. It is his last, best hope in his battle against a rare genetic immune deficiency, which means his little body cannot fight off atypical mycobacterium avium complex (MAC), a rare, environmental, life-threatening bacterial infection that has spread throughout his lymph nodes and blood.
So rare is his condition that only 150 other people in the world are known to have it, and Noah is the only one of a handful in the United States known to have both the infection and the immune deficiency, according to Steven Holland, chief of the laboratory of clinical infectious disease at the National Institute of Health in Bethesda, Md.
Right now, he is holding the infection at bay, giving his doctors a small window of opportunity to attempt a stem cell transplant, which has a 50-50 chance of success.
That will be followed by eight to 10 weeks of isolation plus more medications, including one that could cost $15,000 per month, Jenn Galloy said.
Mounting medical expenses have prompted family and friends to host a benefit Sunday at 115 Bourbon Street, 3359 W. 115th St., Merrionette Park, for “Team Noah.”
“You hear about benefits for families, and I thought, ‘Are we one of those families?’” Jenn Galloy said. “It’s hard to admit we needed help.”
The support has been “amazing,” she said.
She and her husband Ryan grew up in Orland Hills and Thornton respectively, and moved to Plainfield eight years ago. Jenn has taken family medical leave from her teaching job at Joliet West High School.
The past 12 months have been filled with surgeries, tests, medications, doctor appointments and counselors. They have learned to be Noah’s home health care providers, administering all his shots and medications.
“It’s been a hell of a year,” Ryan Galloy said.
“This has changed the entire dynamics of our family. All our energy and focus is on taking care of Noah’s medical needs,” his mother said, fearing they are neglecting their 11-year-old son Brayden, who said he “prays every night” for his little brother.
It’s been difficult to catch a break. They can’t leave the kids with a baby sitter, because Noah needs medications around the clock.
The Make-A-Wish Foundation made it possible for the Galloy family to travel to Disney World so Noah could meet Mickey Mouse over the Thanksgiving holiday. But even that trip was interrupted by a visit to the local hospital emergency room, and news of the sudden death of Jenn’s uncle.
A perfectly matched donor was found — a 59-year-old man from Germany, whose doctors now are saying he may not be able to follow through with it. Other donors — slightly less than perfect matches — are available, however.
“It’s very scary,” Jenn said. “You feel so alone. There are no other parents to talk to about this. There is no support group for such a rare disease.”
The Galloys’ research led them to the nonprofit Global Genes Project, one of the leading rare and genetic disease patient advocacy organizations in the world, according to its website. Its symbol of hope is a blue denim ribbon.
“I want to meet other families and help them and share what we’ve learned,” said Jenn, who is working with Global Genes on hosting a World Rare Disease Day in Chicago on Feb. 28 to raise public awareness and support for research and treatment of rare diseases.
Brave, little boy
Throughout it all Noah has been a trooper, his parents said.
Since he was an infant, the little guy has been sickly and susceptible to ear infections, which they attributed to his being in day care.
On Christmas Eve 2011, he had an ear infection again, coupled with enlarged lymph nodes. His tonsils and adenoids were removed in January 2012, but his lymph nodes continued to be enlarged. Doctors thought Noah had leukemia or AIDS.
“At least they would know how to treat that. His doctors were dumbfounded,” Jenn said. But once the National Institute of Health confirmed Noah’s diagnosis in May, they switched to the University of Chicago Comer Children’s Hospital, where doctors were up for the challenge of treating Noah.
“They have given us all the medications they can. Others (MAC patients) have responded to medication,” she said. “The doctors said it would be like magic, that he will be fine by January. We’re still waiting for the magic.”
It’s magic that they now hope will come via a stem cell transplant.