Baby with rare disease in need of bone marrow transplant to survive

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It's said to be a one in a million diagnosis and right now it's threatening the life of a baby boy from Little Falls, Minnesota. 

For his first four months, Wally Brown was seemingly perfect in every way.

“From the beginning, he’s been such an easy baby,” said Mollie Brown, the boy’s mom.

Over the holidays, Wally got an ear infection followed by a cough and low oxygen levels. Pneumonia and a kidney infection landed him in Children's Hospital on a ventilator. Ultimately, the infectious disease team discovered Wally has Hyper-IgM Syndrome. It’s an extremely rare condition, essentially leaving Wally without a working immune system. It impacts the X chromosome, most likely inherited from mom. 

“If I am a carrier, I have a 50 percent chance of passing it down to a boy if we have a boy and then he could be exposed to this disease again,” said Mollie Brown. “Or if I have a girl, she would have a 50 percent chance of being a carrier as well.”

Wally is just the third baby in six years to receive this diagnosis at Children's. Dr. Tamara Pozos says the disease often doesn't show up during an infant’s initial blood test because at that point babies still have the mother’s immunity and aren't producing their own antibodies until months later. 

“So it’s really important to raise awareness,” said Dr. Pozos. “A baby around three to four months of age who starts to have too many infections, who isn’t getting better the way you think, who isn’t gaining weight anymore and gained weight really well in the first few months - might have an inherited immune problem.”

The Browns are holding out hope for a bone marrow transplant, which is the only chance to save Wally’s life. Until then, he’s in complete isolation with only his parents allowed to visit.

“It’s crazy what this experience has taught both of us,” said Mollie Brown. 

“It really puts things into perspective, gives you a whole new appreciation for everything,” said Dylan Brown, the father. 

For more information about Wally and becoming a bone marrow transplant donor, click here.