By Kathy McCarty
Staff Writer
PRESQUE ISLE, Maine — Brylee Ann-Marie Gagnon, born Aug. 8 at The Aroostook Medical Center to Shandi Page and Chad Gagnon of Presque Isle, was considered a healthy child at birth, weighing 8 pounds 13 ounces. But in the few short weeks since she was born, Brylee’s family discovered she suffers from a life-threatening illness.
“She appeared to be the picture of health. Doctors had no concerns with her and after a one-day stay in the hospital, baby and Mom were discharged and sent home,” said Debby Page, Brylee’s maternal grandmother.
Like some newborns, Brylee had a few issues with gas and what seemed to be cramping during her first week at home, noted her grandmother.
“She was brought in to see the doctor and her formula was changed. But that did not seem to improve things. Then suddenly when she was 10 days old, she spiked a fever of 104 degrees. She was rushed to TAMC where they decided to Life Flight her out to Bangor immediately,” said Page.
Page said the family later found out that doctors did not expect her to survive the trip, but against all odds she did.
“She spent almost a week in Bangor’s NICU and dozens of tests were run to find the cause of the fever. It was determined that she had a very serious pseudomonas infection in her blood and GI tract. She was then transferred to Portland to meet with a pediatric gastroenterologist. She ended up spending a month in the hospital to be sure the infection was completely gone,” she said.
It was during this time, Page said, that the underlying problem was discovered.
“Brylee was diagnosed with Leukocyte Adhesion Deficiency, Type 1B, a very rare life-threatening disease. We have been told only three or four babies a year are born with it in the U.S. It basically means her immune system is not functioning, and she cannot fight off any bacteria or fungi,” said Page.
Page said doctors indicated most babies born with this disease will die of an overwhelming infection before their first birthday unless they get a stem cell transplant.
“That is Brylee’s only hope for survival. Doctors have given her an approximate 80 percent chance of recovery (if she gets a transplant), which makes us very hopeful,” she said.
Brylee is now 8 weeks old and is home awaiting her transplant. Family members have to follow very strict guidelines to keep germs away from the baby.
“She is on a prophylactic antibiotic along with an anti-fungal to try to keep her infection-free. The family also has to follow very strict hygiene rules for her safety. She should not be around large crowds or sick people due to her risk of infection, so Brylee only leaves the house for her doctors’ appointments,” explained Page.
Page said doctors in Boston want to wait until she is 6 months old to do the transplant.
“They have said they feel she has a higher risk of not pulling through if they do it while she is this young. Brylee and her Mom and Dad had an appointment Monday, Oct. 7, in Boston to meet with the transplant team to discuss the plan of care,” she said.
According to Page, Boston health care providers have been involved over the phone during Brylee’s hospitalization, but they have not had the pleasure of actually meeting her yet — at least not until this week.
“They will continue to have monthly appointments in Boston until the transplant happens. We have been told that she will undergo up to a week of chemotherapy to be followed by the transplant,” said Page. “After the transplant, she must remain at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for at least 100 days to be monitored very closely for possible problems, including infection.”
Once the 100 days are up, Page said Brylee will be allowed to go back to the Bangor hospital and must remain there for an additional two months for monitoring.
The little girl will require months of time away from home, with her parents planning to be with her throughout her treatment.
“Brylee will be away from home for at least five to six months, maybe longer. Mom and Dad will both go down and be with her during the most critical period which means an unpaid leave of absence from work for Dad and no income for the family,” she said.
Page said once her granddaughter is stable, her Dad will return to Aroostook County, while her Mom remains with Brylee.
“Brylee’s three siblings will remain here and will be cared for by the grandparents — myself, my husband Steve Page, and paternal grandparents Liz and Kirk Lilley (all of Presque Isle). She has a 5-year-old sister Cheyenne, a 7-year-old brother named Justin and an 8-year-old sister named Jocelyn who live here. She also has a 5-year-old brother Gage who lives in another state,” she said.
Page said no donor has been found to date.
“Testing is still being done to find the best possible match to give her the greatest chance of success. Obviously, everyone in the family is ready and willing to donate, but in this case, because this is a genetic disease, family is not the best option for a donor, so we rely on the kindness of a stranger to save the life of our beautiful little girl,” said Page.
To help with the costs the family will incur, loved ones are trying to raise funds to cover travel and other expenses.
“We’re trying to help with the expenses of monthly trips to Boston and for the five or six months Brylee will be in the hospital. There’s a website set up for donations at www.fundraiserforbrylee.com,” said Page. “If someone would like to send a check to help the family, there’s also an account set up at the County Federal Credit Union. It can be addressed to: Brylee Gagnon, Attn: Dan Bagley, County Federal Credit Union, 82 Bennett Drive, Caribou, ME 04736.”
“We will also be doing a benefit dinner and silent auction in the near future, but plans are still in the works for that,” said Page, adding, “Most importantly though, we’re asking for prayers for Brylee and her family.”
