On a wintry Sunday in Gloucester City, Lori and Brian Seedes found a place in the sun at Monmouth and Brown Streets to watch the St. Patrick’s Parade, hoping that Msgr. William A. Hodge, pastor of St. Mary’s Catholic Church, would bless their son, Beau, 21 months old, who has been fighting for his life since birth.
Beau was born with a rare form of muscular dystrophy -- X-linked myotubular myopathy -- that affects one in 50,000 male babies, most of whom succumb to respiratory failure before their first birthday.
“Beau was born not breathing, no heart rate, completely non-responsive,” Lori Seedes said. “He was that horrible gray color.”
Doctors at Kennedy University Hospital in Turnersville immediately resuscitated Beau, inserting a tube down his throat to enable him to breathe. Last March, when Beau was 9 months old, his parents took him to Gloucester City’s fledgling St. Patrick’s Parade, where Msgr. Hodge walked over and asked whether he could bless the baby.
“We told him sure he could,” Lori said. “We take any prayers we can get. We welcome them.” Hodge said a blessing. “It didn’t hurt, that’s for sure,” Lori said.
On Sunday, Msgr. Hodge spotted the family’s “Team Beau” and “Beau’s Brave Journey” balloons and walked over to Beau, who was cradled in his mother’s arms, wearing a bright green cap and two layers of clothing and being fed through a tube that ran directly into his stomach.
In the midst of the parade’s boisterous mix of Mummers string bands, Irish dancers, bagpipers, drummers, and a truck-borne tenor singing “McNamara’s Band,” Hodge brought his face close to Beau’s and quietly prayed to St. Peregrine, patron saint of those suffering from cancer and other grave illnesses.
Then he gave Lori a laminated St. Peregrine prayer card and a finger rosary (a tiny silver cross on a ring), gently touched Beau’s cheek, and said, “He’s a trooper.”
A few minutes later, Joe Pomante, the dazzlingly sequined captain of Gloucester City’s hometown Durning String Band, strutted over in mid-performance and kissed Beau.
Besides his parents, Beau was surrounded by his close-knit family -- brother Braeden, 4, maternal grandparents Larry and T.J. Bowe, and paternal grandmother Karen Seedes.
“We all live within five blocks of each other here,” Larry Bowe said, smiling. “It’s like a family compound.” Lori said her family’s closeness has provided vital support for the extraordinary care that Beau needs.
“He can go downhill very quickly,” she said. “We’re constantly assessing his breathing. He has weak muscle tone. To cough is very hard. To take a deep breath is very hard. Everything is taxing for him.
“If he is struggling because of extra saliva or mucus plugging his windpipe,” she said, Beau’s muscles are not strong enough to clear it, so she uses a suction pump to “force whatever is sitting in his lungs to come up.”
Beau wears an oxygen mask all night long, she said, and is solely fed through a tube. “He has never eaten food by mouth because he can’t swallow,” she said.
As the parade drew to a close, Lori, ever vigilant, noticed that Beau, resting in his stroller, was struggling to breathe. She quickly knelt in front of him and repeatedly inserted a suction pump tube down his throat, trying to find and extract whatever was blocking his breathing. When she was satisfied that he was breathing well enough to travel the two blocks home, she left.
On Tuesday, Beau will be examined at the National Institutes of Health in Bethesda, Md., to see whether he qualifies for clinical tests of a treatment that improved respiratory functioning in mice, but has yet to be tested on humans.
Brian Seedes said he and Lori are cautiously hopeful. “In 2015, I lost my dad to a sarcoma cancer,” he said. “When Beau was born, he was resuscitated twice. I’m not that religious, but I am Roman Catholic. I felt that Beau being able to recover was like my dad saying, ‘I’m here for you guys even though I’m not here anymore.’ It was like my dad sent Beau to us as a gift.”