Three-month-old Winnipeg boy in need of bone marrow transplant to survive – CTV News Winnipeg

By daniellenierenberg

WINNIPEG -- A baby boy in Winnipeg is in need of a bone marrow transplant to survive, but he has yet to find a donor.

Three-month-old Boston has a rare disease called hemophagocytic lymphohistiocytosis HLH, a rare auto-inflammatory condition with his immune system.

His mother Simone Jannetta, who is a nurse at Grace Hospital, said they need someone who is of mixed race to donate stem cells.

Thats the only way to cure this, she said.

In the meantime, hes just receiving chemotherapy and steroids to help keep him well until then."

Jannetta said the reason they are having difficulty finding a match is because they need someone half Filipino and half Caucasian, and there are not many mixed-race donors currently in the Canadian and worldwide stem cell registries.


This is not the first time the family has dealt with a child facing health issues over the last few years.

When Jannettas daughter and Bostons older sister Beatrix was seven-months-old she presented to the emergency department with a fever and low blood counts. After a bone marrow biopsy, they learned she had a rare condition called autoimmune neutropenia.

So her immune system is not well either, shes very susceptible to infection too, Jannetta said.

Weve had a lot of back and forth with the hospital through herits been a tough road for us.

Anyone in Canada who wants to register to see if they are a match for Boston can go to the Canadian Blood Services website and look up the stem cell registry.

Boston also has his own link where you can register. The Canadian Blood Services will then mail you a kit with a swab, which you can send back once completed.

Its that simple, Jannetta said.

Youre put on the registry and Boston can then match with somebody.

For anyone who is thinking about registering to become a stem cell donor, Jannetta wants them to know they could save somebodys life.

Its not hard, theres no obligation follow through even if you do register, she said.

Theres just such a small representation of ethnically-diverse people on the registry and I just feel like everybody deserves a chance.

- With files from CTVs Nicole Dube.

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Three-month-old Winnipeg boy in need of bone marrow transplant to survive - CTV News Winnipeg

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