Air National Guard 2nd Lt. Amin Ansari and his wife, Jessica, are asking the military community for support to find a match for their infant son, Noah.
Noah was born with Wiskott-Aldrich Syndrome, a disease that only affects approximately 1 in a million. It also prevents his blood from clotting properly, leading to risk for severe bleeding and bruising. An injury or fall can be life-threatening for him.
The diagnosis came just weeks after birth when Noah kept getting infections and large cysts or abscesses that doctors had to drain at Nationwide Children’s Hospital.
“He had an infection when he was 5 weeks old and had to have surgery,” Jessica said.
When the lab took his blood and reviewed the results, the doctors discovered the small platelets and quickly diagnosed Noah with Wiskott-Aldrich Syndrome.
The weeks leading up to the diagnosis were extremely challenging for both parents.
“He was a very unhappy baby. We couldn’t figure out what was wrong; we thought he was colicky because he cried constantly,” Amin said. “We had no clue what was wrong with him but now looking back at pictures of him, he just looked miserable.”
Part of the disorder also includes allergies. After his initial surgery, doctors realized that Noah was allergic to the protein in milk which is found in most formulas.
“We got him on the right formula and he turned a corner. He became a very happy baby,” Amin said.
Amin, who previously served in the Navy, has spent the majority of his military career in the medical field and had never heard of the disorder before Noah’s diagnosis. He’s currently a Medical Plans Officer for a Homeland Response team.
“We go wherever we are needed and provide medical care,” he shared.
Before being airman, Amin was a sailor.
“I enlisted in the Navy in August of 2001. I was in boot camp when 9/11 happened and I thought it was a training drill,” Amin said. “Originally I was a cop in the Navy and did my four years and got out. I did some soul searching and it drove me to learn more about the healthcare field. I did what I knew best thinking the military would teach me everything I needed to know.”
That led to joining the Air National Guard as an Aerospace Medical Technician. After deploying to Iraq and his subsequent return home, he wanted to go full-time. Amin took all the assignments he could, eventually becoming a medic and respiratory therapist. Right before discovering Noah’s diagnosis, he commissioned as a medical officer. He said he is thankful for his medical background as the family navigates advocating for Noah.
Doctors initially pushed to do a bone marrow transplant when Noah was 6 months old. But as he continued to thrive and do better, they decided to wait.
“We already feel so grateful that we’ve been given the gift of time when we originally didn’t think that was going to be the case for him,” Jessica said.
Due to the severity of his condition, doctors want to move forward with a bone marrow transplant no later than the spring of 2022. To ensure success of the transplant, Noah’s family is seeking a perfect match in order to avoid possible rejection. This where the family is hoping to rally the military community for support.
Noah is facing unique challenges to finding a perfect match due to his ethnicity.
“Given that Noah is biracial, his chances of finding a perfect match drop significantly,” Jessica said. “Our hope is that we can bring some diversity to the registry.”
Amin echoed that sentiment and highlighted the vital need for awareness.
“To show how crazy this is, he has some potential matches. But they are in Germany and Poland. It’s mind blowing considering everyone we have here in this country but no one knows about it,” he said. “This is something I am hoping we can change. If there is an emergency situation with my son and the nearest match is that far away, how many things can go wrong in that time? It’s scary to think about.”
Those who are able to give bone marrow may experience back pain, headaches, or bruising. The bone marrow donation process is much more difficult on the recipient than the donor because of the need to essentially remove the immune system. The chance of rejection is also a risk. But doing nothing isn’t an option for Noah or other children waiting for a match.
“We as parents just want to give Noah the chance to be a thriving toddler, where we don’t have to worry if he scrapes his knee,” Jessica said. Amin agreed, saying “He has a great chance of just getting to be a little boy.”
Registering with Be The Match is simple and it’s free if you are between the ages of 18-44 years old. Individuals can simply text SAVENOAH to 61474 or register online. Be The Match will mail a cheek swab kit to your home, with no cost to you.
