The Hyper IgM Foundation Blog
DON’T ALLOW THE FEAR TO TAKEOVER: THE STORY OF NAR
Aug 5, 2017
The fear of the unknown is ranked in the top 30 of every common list of fears. That was the worst part for Meaghan and Nar II Scaia — not knowing. “We deal with invisible enemies: the germs. You have to be so vigilant, constantly…. I didn’t want him to grow up fearful, but I didn’t want him to go through a major illness from that high-five he gave the cashier at the grocery store either,” Nar’s mother Meaghan said.
Nar Scaia is five years old from Middletown, Connecticut. In 2013, Nar was diagnosed with Hyper IgM Syndrome at just 20 months old.
Nar had over 9 infections in the same year as a newborn, but even so his diagnosis came as a shock to his parents. It had been clear that his immune system was unwell, but Meaghan and Nar II didn’t know just how unwell until Nar was diagnosed by Dr. Nicholas Bennett of Infectious Disease and Immunology at Connecticut Children’s Medical Center during a period of critical illness with a pneumococcal pneumonia, sepsis and renal failure.
Meaghan says, “There have been some really tough times. We have absolutely gone through the ‘why us? Why Nar?’ stage of dealing with the diagnosis of a life threatening condition.” During Nar’s initial hospitalization he had to be on a ventilator and received continual dialysis for over a month long.
While his parents were aware that a bone marrow transplant was the only potential cure, they carefully wanted to give his body time to heal from the damage he sustained being so sick previously, and they wanted to become more educated on the procedure before moving forward.
Three years later, after extreme research, Nar underwent a T-cell Depleted Stem Cell Transplant in May of 2016 at Memorial Sloan Kettering in NYC. During his transplant, he had some issues with a reactivated virus and graft-versus-host-disease (a condition that occurs when donor bone marrow or stem cells attack the recipient) in his gut. He was in isolation, unable to leave his room, for over 70 days of that time. “That was very hard, for so many reasons,” Meaghan says.
Initially after diagnosis, he started weekly subcutaneous infusions of Immunoglobulin G at home. The infusions did their job well, and his new donor cells make their own antibodies, and he has shown immune response to vaccination. Nar is growing, thriving and enjoying the wide array of “normal” activities he can now do.
“We have…been extremely fortunate. We have found great support in the Hyper IgM group. Our family, friends, church and community have been more supportive than we could have ever imagined in every way possible,” Meaghan said.
Nar’s day to day is “wonderfully normal.” He has enjoyed spending his summer with his dad — playing mini-golf, going to the movies and taking part in summer picnics. Nar likes to play Candy Land and Zingo. He loves Macaroni and Cheese and adores trains. He’s even mentioned wanting to be a train conductor when he grows up.
Meaghan says she struggled with trying to protect her son and and maintaining “normalcy,” and that the fear can certainly take over. Even after a successful transplant, she still works on not allowing her own fears to prevent him from valuable childhood experiences and not to allow fear to take over.
On behalf of the Hyper IgM Foundation I would like to congratulate the Scaia family! Not only is Nar successfully recovering, but he will also be starting Kindergarten and becoming a big brother in the fall!
Written by Hannah Ross