PRESQUE ISLE, Maine — At this time of year, many families across the state are giving thanks for a steady income, a home to live in or continued good health.
For the Gagnon family of Presque Isle, they are celebrating the fact that they have been blessed with something different — a successful bone marrow donor match for their baby daughter.
“We have so much to be thankful for this Thanksgiving, and this holiday season, really,” Shandi Page, the mother of three-month-old Brylee Ann-Marie Gagnon, said on Wednesday. “There is so much uncertainty in this process, but this has so far gone smoothly for us.”
Brylee, the daughter of Page and and Chad Gagnon, was diagnosed soon after birth with leukocyte adhesion deficiency, a rare disorder that affects the body’s immune system. LAD is a rare disease, according to a website dedicated to a disease, with an estimated prevalence of 1 in 100,000 births. Symptoms include recurrent skin and internal infections, delayed wound healing and more. It can be cured with a bone marrow transplant, and doctors have given Brylee an 80 percent chance of recovery if she gets a transplant.
The baby was born at TAMC’s A.R. Gould Memorial Hospital on August 8. Gagnon said that she felt that something was wrong with her daughter from the start.
“She seemed to have trouble using the bathroom, and she groaned a lot,” she said. “She was never quiet. When she was in the hospital, I brought it up to them, but they told me that it was normal.”
When Brylee was ten days old, however, she was rushed back to the Presque Isle hospital with a fever of 104 degrees. From there, she was taken by LifeFlight to Eastern Maine Medical Center in Bangor, where she spent nearly a week in the neonatal intensive care unit. It was there doctors determined Brylee had a serious infection in her blood and gastrointestinal tract. The infant was transferred to Portland to meet with a pediatric gastroenterologist. She struggled, and spent the next month in the hospital to be certain the infection was completely gone. It was during her hospitalization that doctors diagnosed her with LAD.
“I had no idea what it was, and they told me not to Google it because I would see some scary things,” said Page. “So of course, that is the first thing I did. She came home from the hospital with a central line, which we had to clean, and that was very nerve wracking. They also didn’t talk about what her chances were of getting a transplant. We all worried, her grandparents, her siblings, the whole family.”
In October, more than 175 County residents joined members of The Aroostook Medical Center team at the North Street Healthcare facility to be tested as bone marrow donors. The hospital partnered with the national organization, Be The Match, to hold the local drive in hopes of helping find a match for a life-saving bone marrow transplant.
Goals for the event were both to raise awareness about the need for marrow donors and to perhaps find a matching donor for the infant and many other patients. A steady flow of area residents entered TAMC’s North Street Healthcare Facility. and the original goal of 50 new donor registrants for the drive was more than tripled.
When the family when to Brewer for a doctor’s appointment for the baby on Nov. 8, they thought that they were just going for a checkup.
“It was then that they told us that a donor had been found,” said Page. “It was on the day when she was exactly three months old. I teared us instantly. It was just such a huge relief. “
Debby Page, Brylee’s grandmother, agreed.
“Excited doesn’t even begin to describe the wealth of emotions we are all feeling right now,” she said. “Although the match wasn’t one of the people that was tested at the drive hosted by TAMC, we so appreciated their willingness to come in and get tested. Now they are on the list and may be able to help someone else with their own miracle in the future.”
Page said that Brylee is doing well now while she is home on medications. The family has to be careful about visitors, making sure to keep people who may be ill away from her due to her compromised immune system.
“I had to wear a mask for a full week just because my throat felt a little sore,” said Page.
The family does not expect that the bone marrow donation will take place until she is at least one year old. It will take place at the Dana Farber Cancer Institute in Boston.
“Doctors want to wait until she is older and stronger to do the transplant,” she said. “Brylee goes to Bangor once a month for a check-up, including a white blood cell count. As long as she remains healthy, the doctors hope to wait until she is one year old for the transplant. The longer we can wait, the better the chance of her to survive the procedure and for a successful outcome.”
With the challenge of finding a donor now having been met, the community has been helping the family raise funds to help with expenses associated with her medical treatment. A benefit supper already has taken place. While ideally the procedure is months away, that could change if Brylee’s health declines. The family has insurance, but Brylee will have to be in a Boston hospital for at least six months.
“Our family would like to thank everyone for their thoughts, prayers and well wishes for our little girl. They keep us strong,” said Page. “It will be a long, hard road ahead for Brylee, her parents, siblings, grandparents and everyone else who loves her, but we will make it through. Please continue to keep her in your prayers as she goes forward with her treatments. We are forever grateful.”
The family has set up a website, www.prayersforbrylee.com, where citizens can follow her progress and make donations for her care if they wish.