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Community rallies to raise funds for B.C. baby diagnosed with extremely rare cancer

Click to play video 'North Vancouver brewery rallies around family with baby battling rare cancer' North Vancouver brewery rallies around family with baby battling rare cancer
A North Vancouver brewery has created a special beer, with all of the proceeds going to a family dealing with an extremely rare form of cancer in their one-month-old baby. Linda Aylesworth reports. – Feb 23, 2021

A North Vancouver brewery is joining the battle to help save a newborn’s life after he was diagnosed with a rare pediatric cancer when he was only a few days old.

Alejandro Angel was born on Jan. 20. When he was only one week old, his parents noticed a lump on his leg.

Tests at BC Children’s Hospital revealed little Alejandro has a very rare and aggressive form of cancer known as a malignant rhabdoid tumour with SMARCB1 mutation on chromosome 22.

According to the U.S. National Institutes of Health’s National Library of Medicine,  mutations and deletions of SMARCB1 in chromosome 22 “predispose patients to rhabdoid tumor and schwannomatosis.”

Most tumours are characterized by loss of function of the SMARCBI gene in chromosome 22, which means the body is missing the “chromatin-remodeling complex of proteins”, according to the U.S. National Library.

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Without this protein, the body cannot suppress tumour growth. Currently, Alejandro has tumours all over his body, including one pressing on his airway, according to his uncle Felipe.

Alejandro’s family says there are only nine previously-recorded cases of this cancer in the world, making their baby number 10.

Now the family is having a hard time finding a doctor who will treat his cancer because Alejandro is so small.

“My brother got into gear and started calling hospitals around the world — oncologists and pediatricians around the world — and seeing what possibilities are for experimental treatment and who would accept Alejandro for treatment as well,” Felipe told Global News Tuesday.

Click to play video 'Second B.C. family desperately fundraising for baby’s life-changing therapy' Second B.C. family desperately fundraising for baby’s life-changing therapy
Second B.C. family desperately fundraising for baby’s life-changing therapy – Jul 18, 2020

The family is now raising money to support the family and fund some alternative treatments.

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Felipe said they have had a positive response from Boston Children’s Hospital and Dana-Farber Cancer Institute and they are hoping little Alejandro can get some treatment there.

Read more: One year to raise $2.8M: B.C. family races the clock for baby’s life-changing therapy

“Boston Children’s Hospital, if Alejandro were to be accepted and admitted, requires a $1-million U.S. deposit, just to start off with,” Felipe said.

“We continue to hope on a day-to-day basis.”

The family has launched a GoFundMe page where anyone can donate.

North Point Brewing Co. in North Vancouver has also created a brew, called Alejo IPA. A portion of the sales will go to the GoFundMe page.

Alejo IPA will be available at North Point Brewing Co. Credit: Linda Aylesworth / Global News.
“It’s the first baby in our family, and [his mother’s] so everyone — parents, uncles, aunts — were just delighted he was here,” Felipe said.
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“It’s humbling to ask for money and it’s been a hard year for everyone and I understand money is extremely tight. If you can help in any way, we would be extremely grateful.”

Felipe said at 8 p.m. every day the family also sits down to send some positive vibes and love to Alejandro so if anyone can help them do that, it would also be a way to contribute.