Manitoba

Winnipeg family desperate for ethnically diverse stem cell donor to save 3-month-old boy

Boston De Castro has a rare immune disease called hemophagocytic lymphohistiocytosis, or HLH

Posted: November 04, 2020
Last Updated: November 10, 2020

Boston De Castro was born healthy and his mother says he loves to laugh and smile with his big sister, Beatrix. (Submitted by Simone Janetta)

A three-month-old boy in Winnipeg is going through his first round of chemotherapy while his family searches for a stem cell donor that could help save his life.

Boston De Castro has a rare immune disease called hemophagocytic lymphohistiocytosis, or HLH. To make matters more complicated, the best chance of a matching stem cell donor being found for Boston, is finding someone of mixed ethnicity like him — half-Caucasian and half-Filipino. 

"We are just begging the community. Anybody who is half-Filipino [and] half-Caucasian, even if you're any other ethnic minority, just get on the stem cell registry. You could save a life, just like our son's," said mother Simone Janetta. 

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Part of the criteria that matches two people's stem cells is understood to be inherited, which is why Boston's family is looking to get more ethnically diverse people into the Canadian Blood Services stem cell registry

Donors are currently required to be between the ages of 17-35, with a preference for male donors, in order to reduce post-transplant complications.

According to Sarah Jasmine of the Canadian Blood Services, about 66 per cent of the stem cell database is Caucasian and only about 3.5 per cent is of mixed ethnic background.

Rex De Castro holds his daughter Beatrix and his son Boston. (Submitted by Simone Janetta)

"Anybody that joins the registry is providing hope to patients like Boston, who are just desperately searching for that match," she said.

"Knowing that you might have been the only person in the world that could have matched that patient … that's a huge thing to be proud of." 

Boston's symptoms started with a fever a couple of weeks ago, then his liver and spleen enlarged and his blood counts dropped shortly after. After a bone marrow biopsy, doctors diagnosed him with HLH. 

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His chemotherapy and a steroid treatment have made huge improvements in his health, family says. 

"Last week he was basically dying and if it weren't for the blood, the platelets, the chemo and the steroids, it would have been really bad," said father Rex De Castro. 

Mother Simone Janetta is hopeful that she will be taking her son Boston De Castro home this week while continuing chemotherapy. (Submitted by Simone Janetta)

The family hopes they can take Boston home this week to continue his treatment there, and be near his 2½-year-old sister, Beatrix.

A GoFundMe page has been set up to help both parents while they wait to find a matching stem cell donor. 

"I'm kindly begging anyone with a mixed-race ethnicity to donate their stem cells … to help my son survive. The chemotherapy and the steroids is a temporary fix, and he needs the stem cell transplant really bad," said Rex De Castro. 

WATCH | Stem cell donor needed to save 3-month-old boy:

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Boston De Castro has a rare immune disease called hemophagocytic lymphohistiocytosis, or HLH. To make matters more complicated, the best chance of a matching stem cell donor being found for Boston, is finding someone of mixed ethnicity like him — half-Caucasian and half-Filipino.  2:09