Having a sick child is a harrowing experience, but discovering that your child has a rare and fatal immune disorder that leaves him unable to fight off infections is one of the worst things that can happen to a parent. Amanda and Akiva Zablocki of New York City had their first child and were happy to run around and enjoy the joys of new parenthood.  And then their child Idan became ill with pneumonia — and not the normal kind, but a rare type that essentially means an individual has no immune system left.

The parents had no idea what could have caused their child to become so ill at such a young age. Doctors then took a close look at Idan’s bloodwork and noticed that he only had one type of antibody immunoglobulin M, or IgM. His disease now had a name, Hyper IgM, and the chances of being born with the disease is two in one million.

It's often dangerous to have so little of this antibody because immune cells called B cells produce all sorts of antibodies, including IgA in the gut and breast milk, IgG that is produced during infections, and IgE that is made in response to allergens and parasites. Like everyone else's, Idan’s B cells began as IgM-producing, yet his were unable to make a switch to the other types. This left him unable to build up immunity to commonly encountered pathogens, such as fungi, viruses, and bacteria.

Once the culprit was found, Idan’s doctors raced to come up with a treatment and find a bone marrow match. Because B cells, like much of the immune system, originate from the bone marrow, Idan would need a bone marrow transplant from a compatible donor who didn’t have the genetic defect. Until he gets treatment, Idan is getting injections of immunoglobulin purified from donated blood, which is a way to temporarily offer him the antibodies that he is missing.

Although they are insured, Idan’s parents are trying to get the best medical care for their child. Unfortunately, there have been issues between their insurance company and Seattle Children’s Hospital, which has agreed to perform the bone marrow transplant. "The insurance [company] can decide how much it's willing to pay," Amanda explained. The family is seeking donations on their website and have already raised $134,000 for the treatment, which will effectively cure Idan from his genetic disorder and give him a functional immune system. 

But, the cure is not without its own risks and carries a 10 to 15 percent chance of failing and being fatal. The reason that it is so risky is that Idan must be treated with chemotherapy to kill off his existing bone marrow and to make room for the new bone marrow. Additionally, if the donated bone marrow is rejected by Idan’s body, then he would not have much of a chance of being cured.

Idan’s doctors are trying to have the transplant completed as soon as possible because flu season is around the corner and, without a functioning immune system, he is at severe risk of complications if he contracts the flu.

You can find more information about Idan on the fundraising website for him here