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Panama City infant baby Declan suffers from rare disease; parents pray, friends raise funds
News Herald - 3/3/2021
Mar. 4—PANAMA CITY — The name "Declan" carries associations such as "man of prayer" or "full of goodness," and for a baby of that name from the Panhandle, the prayers have been lofting to the heavens since shortly after he was born.
Declan Carpenter was born to U.S. Marine Reserve Sgt. Christopher Carpenter, an electrician, and his wife, Jenny Carpenter, of Panama City on Aug. 4, 2020. But just two months later, Declan experienced life-threatening breathing issues.
"We were at Gulf Coast (Regional Medical Center) for five days with him on oxygen in the PICU (Pediatric Intensive Care Unit) before he was LifeFlighted to Wolfson" Children's Hospital in Jacksonville, said Christopher Carpenter.
Tests and lifesaving measures followed, with the parents finally receiving Declan's diagnosis in November: Spinal Muscular Atrophy with Respiratory Distress Type 1. The genetic condition causes muscle weakness and respiratory failure that typically shows up in infancy. With diaphragm paralysis, patients with SMARD1 require life-long support with a machine to help them breathe.
According to the American College of Obstetricians and Gynecologists, between 1-in-40 to 1-in-60 people are carriers of SMA (Spinal Muscular Atrophy). If both parents are carriers, they have a 1-in-4 chance of having a child with SMA. About 1 of every 6,000 to 10,000 children are born with SMA.
However, SMARD1 is even more rare. It has been diagnosed in only about 100 children in the world, but the exact number of cases is unknown, according to Smash SMARD, a nonprofit organization based in Linconshire, Illinois, which is funding research to find safe and effective treatments and ultimately a cure for SMARD1 and related disorders..
To help the Carpenters, a group of fellow U.S. Marine reservists — Carpenter's "Third Force family" — established a GoFundMe campaign in Declan's name on Feb. 23, according to information provided by Claudia Curiel, regional spokeswoman for GoFundMe. As of March 1, they had raised just over $5,300 toward the $15,000 goal.
You can find the campaign at the URL GoFundMe.com/f/caring-for-baby-declan.
Christopher Carpenter also encouraged those of a giving heart to consider donating to Smash SMARD (SmashSmard.org/).
He added that his hope was to "raise awareness, thank those who have helped us and use it as a chance to uplift God and his huge role in our life."
Declan's diagnosis came in November, and on Thanksgiving weekend, Declan technically passed away, his father said.
"They resuscitated him and intubated him, and they scheduled a (tracheotomy) because he was not able to breathe on his own," Christopher Carpenter said, his voice breaking. "And they asked the hardest question, the one no parent should ever be asked."
Knowing Declan's life expectancy was less than two years, and there is currently no cure for his condition, Carpenter said the doctors asked if he and his wife wanted to shut off the life-sustaining equipment and let Declan go.
"It's been rough," he said. "We're first time parents."
Married in October 2015, Christopher Carpenter has been a reservist for nearly nine years. Jenny Carpenter worked at HP Learning Academy at Hiland Park Baptist Church in Panama City, but left there to care for Declan full-time.
Add to that, their first home as a family, located along McKenzie Avenue in Panama City, was destroyed by Hurricane Michael and they had been living in a small trailer for months.
"Our church has been amazing," Christopher Carpenter said, referring to the First Assembly of God in Panama City. "We both volunteered at the church, and they've been praying, they've taken offerings for us and delivered meals for the last two-and-a-half months."
In January, Declan endured a 5-hour ambulance ride from Jacksonville back to Panama City after his release from the hospital, his father said. Now he's under constant care at their home, attached to a respirator that breathes for him.
He's still only six months old.
"Chris, since he is an electrician, was able to wire a generator up to the house to provide emergency power for Declan's life support equipment in case they lose electricity," one of the GoFundMe organizers wrote on the campaign's page.
His parents hold out hope that an as yet-undiscovered gene therapy might help Declan improve. Clinical trials for medications and physical therapy treatments are ongoing.
But those are the hopes of an uncertain future, while they struggle to maintain today.
"They had saved for years before having Declan, but their savings was wiped out in 2018 when their house was destroyed by Hurricane Michael, and their remaining salvaged belongings were stolen out of a storage unit," according to the GoFundMe organizers. "Chris' employer's insurance does not cover Declan's care, and so they are trying to get additional nursing care through WellCare to help during the week when Chris is at work."
Jenny Carpenter has stayed by Declan's side since this ordeal began. Christopher Carpenter works during the day and helps out at night. But their single income isn't stretching very far, supporters said.
One thing organizers hope to help them do is trade in their current car and purchase a minivan that would allow them to transport Declan to medical appointments in a special car seat that would also allow room for his life-support equipment. They are also hoping a dealership might step in to donate a vehicle.
"The one thing I would do is encourage people to pray for Declan, and for those hurting around him — and for them to know that God still works miracles," Christopher Carpenter said. "That's what we believe."
HOW TO HELP
Donate to the GoFundMe campaign at GoFundMe.com/f/caring-for-baby-declan.
Donate to the nonprofit organization "Smash SMARD" (SmashSmard.org/).
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