Noah Ansari was just 3-months-old when he was diagnosed with a rare and life-threatening immunodeficiency disease called Wiskott-Aldrich syndrome

By Joelle Goldstein
January 21, 2021 11:58 AM
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Noah Ansari
| Credit: Courtesy Jessica Ansari

A baby boy is in desperate need of a bone marrow donor — ideally before he can crawl and walk — after being diagnosed with a rare genetic disease that severely affects his immune system and blood clotting functions, his family tells PEOPLE.

Jessica Ansari says she and her husband Amin never expected to learn that their son Noah needed a bone marrow transplant, especially since they already were the parents to a healthy, 2-year-old daughter named Emily.

"You really never think that this is going to be your child. You just pray for a healthy baby," says Jessica, 33. "We had already had a child and she was healthy, so we didn't expect this."

But sadly, that has become the Ohio family's new reality following Noah's diagnosis of Wiskott-Aldrich syndrome in early November. The disease is a rare, genetic immunodeficiency that prevents a child's immune system from functioning properly, according to Boston Children's Hospital.

Wiskott-Aldrich syndrome, which typically affects one to 10 out of every 1 million boys, makes it difficult for a child's bone marrow to produce platelets, and subsequently causes "hard-to-control bleeding, even from the mildest bumps and scrapes," the hospital states.

Due to the severity of Noah's condition, doctors want to perform a bone marrow transplant by March, just after Noah turns 6-months-old and following flu season.

Noah Ansari
| Credit: On a Limb Photography

But that's dependent upon whether Noah can find a perfect match — a process that has become increasingly difficult for the infant, whose chances have dropped below 23 percent due to his biracial ethnicity.

"We did know that it was going to be hard to find him a perfect match," says Jessica. "We ideally need to do it before he starts crawling or walking, just because of his risk of falling."

"I know everybody thinks that their kids light up a room, but I just feel like Noah does in a different way," she adds. "He's just wonderful."

Noah's battle with Wiskott-Aldrich began immediately after he was born on Aug. 13, though doctors weren't initially concerned with what they saw.

Noah Ansari with mom Jessica, sister Emily and dad Amin
| Credit: Courtesy Jessica Ansari

"He had a pretty large hematoma on his head," Jessica recalls. "That can happen with births, so it wasn't anything that made us alarmed."

Within a month, the hematoma cleared up, but by mid-September, Noah contracted a perianal abscess infection that landed him in Nationwide Children's Hospital in Columbus.

"Those aren't terribly uncommon either with newborns. At that point, we were just thinking, 'Oh, we're having bad luck,'" explains Jessica. "They went ahead and treated him, but then four days later, he had a re-occurrence of that infection on the other side."

Because of the back-to-back infections, doctors decided to perform surgery on Sept. 25, which is when they noticed Noah had a low quantity of small platelets.

"At that point, we realized something more was going on," Jessica recalls, adding that because Noah was also bruising easily and experiencing severe eczema, doctors believed he had Wiskott-Aldrich syndrome.

A genetic test later confirmed doctors' suspicions, and the infant was officially diagnosed with the disease by the time he was at the 3-month mark.

"That was a very hard week for us. There were a lot of tears," Jessica says of her and Amin, 38. "I didn't want them to tell us that it was Wiskott, but we kind of knew that it was."

"I do realize how lucky we are to have an answer though," the mom of two adds.

Noah and Emily Ansari
| Credit: Courtesy Jessica Ansari

Following Noah's diagnosis, Jessica and Amin reached out on Facebook to see if they could find their son a donor, after learning their daughter was not his perfect match.

The response, Jessica says, was "overwhelming," with their posts shared 1,000 times within the first 24 hours.

"We were blown away," she explains, adding that Be The Match also shared Noah's story on their website. "We've just had so many people who want to help and it's been amazing."

As Noah waits to find his match, he has been receiving preventative care treatment, which includes monthly intervenous immunoglobulin (IVIG) and antibiotics every other day.

He also has biweekly doctor appointments to check his platelets and sees a dermatologist, who regulates his eczema.

"There are definitely days where it starts to sink in a little bit more, and those days are hard because I realize that this is my son who I'm talking about, and that this is real," Jessica says. "But I try to remind myself that he's right here in front of me and that he's okay. And today, he's smiling and we're going to keep going on."

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Though the future may be uncertain, the Ohio mom is finding comfort in the impact that Noah is already leaving on the world at just 4-months-old.

"Wiskott-Aldrich affects one in a million males, and I believe Noah is one in a million," she explains. "Even if we don't find a perfect 10 for Noah, I am proud of him as a mother that he has encouraged people to even look into being a match."

"It's a crazy thing that you could save somebody's life from just giving your stem cells," she adds. "And if Noah can bring some awareness to the need for bone marrow, then I couldn't ask for any more."

Those interested in joining the Be The Match Registry can do so here.