Baby's Battle With Rare Immune Disorder Spurs Outpouring of Support

February began with Evan and Jenna Galvanek doting on their soon-to-be eight-month-old son, Deklan. 

The baby was just like any other: cooing, playing, and boasting the inherent cuteness all little ones have. He was also embarking on his first cold, which, over the next few weeks, would transform the family’s lives.

Deklan Galvanek’s cold turned into an earache, which led the family to the pediatrician. A round of antibiotics should have done the trick, as it has for millions of other children around the country.

“That’s when things got weird,” said Evan Galvanek, who grew up with his brothers in Long Valley and graduated West Morris Central in 2003. “(Deklan’s) skin color changed, and he was laboring to breathe.”

The scare sent the family back to the pediatrician, who had the family rush to the nearest emergency room. Doctors there found the baby’s heart was beating more than 200 times per minute and fluid had begun to fill his lungs.

At first, while doctors were able to stabilize Deklan, they couldn’t decipher the genesis of the baby’s problems. The Galvaneks began thinking it was a heart defect the baby may have been born with but had gone undetected, but more testing revealed a new world of problems.

Further testing at a second hospital showed Deklan was simultaneously infected by three viruses: rhinovirus (the common cold); H1N1 (originally referred to as Swine Flu and became pandemic in 2009); and Enterovirus, which can go undetected unless the person infected has a weakened immune system.

And that’s when the Galvanek’s worst nightmare became a reality.

‘Bubble Boy’ 

On Saturday, Feb. 22, at his third hospital in North Carolina where the Galvaneks currently live, doctors revealed Deklan had Severe Combined Immunodeficiency (SCID), also known as Bubble Boy Disease.

The disease was made famous in the 1970s when David Vetter was born with the disease and lived the first few years of his life in the Texas Children’s Hospital. Growing older, Vetter lived at home with his parents until he died at age 12. He essentially lived in a plastic, sterile environment and could only come in contact with sterilized objects.

SCID’s defining characteristic is a severe defect in the T and B lymphocyte systems, according to scid.net. Essentially, someone with SCID has virtually no ability to fight off infection on their own.

Doctors found that Deklan was not producing T-cells to fight off infection, and diagnosed him with SCID. The next step in the process will be for the baby to undergo a bone marrow transplant with the donor being either his mother or father, Galvanek said.

The procedure will be done at Duke University hospital, the Galvanek’s fourth medical center in this process. They relocated there Wednesday afternoon. Duke has performed some 200 transplants for patients with SCID, Galvanek said, good for best in the United States. The disease is at an extreme level of rarity, affecting one in every 50,000 to 100,000 births.

There’s a 75-percent chance the transplant will be successful, Galvanek said, and Deklan’s T-cells would then be tested for the disease three months later. Statistics show that if a baby is tested before three and-a-half months of age, he or she has a 95-percent chance of treating the disease through transplant.

According to scid.net, screening for the disease on all newborns is mandatory in 17 states. North Carolina is not one of those states, and Louisiana and Puerto Rico have both stopped the screening due to a lack of funding. 

While Deklan has been improving in recent days – he’s off most of his medicines now and is showing interest in toys – the fight has been nothing short of extreme. One of the baby’s doctors told a local television station recently that Deklan was, at one point, fighting for his life. 

A Painful, Expensive Process

“It’s been terrible on us,” Galvanek said. “There isn’t much sleeping at night when you’re in the intensive care unit.”

Galvanek knows this is just the first step in a lifelong process. “This is a life change for us,” he said. “It will continue into the future and we’ll need to change everything at home.”

Saddled with an out-of-network $13,000 health insurance deductible, costs have already begun to mount for the family. The first emergency room visit for Deklan, which lasted three hours, has already been billed at $5,000 for the family.

Galvanek said doctors estimated the entire process – extended hospital stay, testing, transplant, and so on – will likely go beyond $1 million in overall cost.

The Galvaneks have been keeping friends and family updated on their situation and Deklan’s progress through a Facebook page called “Bring Deklan Home.” The Facebook page had nearly 3,000 followers in just a few weeks. 

A friend of the family has also set up a fundraising page on youcaring.com. Deklan’s specific site, which also includes updates, photos, and an option to donate to the family can be found here.

An initial fundraising goal on the page was set at $20,000. As of Thursday afternoon, the donations had eclipsed $15,600. That figure, however, will only dent the current and future costs the family will ultimately incur.

“Every day more and more of our sweet boy comes back,” Galvanek wrote on the Facebook page. “Thanks to medical advancements, our son should be able to play in the dirt like every other kid after his bone marrow transplant and an appropriate amount of time for his little immune system to begin to function correctly.”

For now, the fight continues, and the Galvaneks will stop at nothing to bring Deklan home.