Family of Edmonton child with ‘bubble boy disease’ urging others to donate plasma, blood

Doctors didn’t think Jakob Guziak would live past the age of two.

Now he’s set to celebrate his fourth birthday – and his family wants to celebrate his life by making sure others like him are also able to receive the gift of life.

“For us, it’s a really important thing to celebrate his life by giving life to others,” said Paola Andrea Fernandez de Soto Abdulrahin, Jakob’s mom.

“Without plasma products or plasma donors, my son would be missing out on a very important part of his efficient immune system.”

As a newborn, Jakob was born with ADA-SCID (Adenosine Deaminase-Severe Combined Immunodeficiency) – more commonly known as the “bubble boy disease.” As a result, he is unable to fight off most types of infections.

“Jakob receives plasma once a month, so he is one of the many patients who receives plasma,” said de Soto Abdulrahin. “And I was a cancer patient myself, so I know the importance of these life-saving products.

“For him, it protects him. It gives him antibodies, and literally it gives us one more day with Jakob.”

Jakob Guziak, the Edmonton boy with “bubble boy disease,” with his mother Paola Andrea Fernandez de Soto Abdulrahin. (Courtesy: Facebook/Jakob, little fighter)

Shortage of blood, plasma across Canada

But there’s presently a short supply of those life-saving products.

“We are seeing this as a national challenge, and we are seeing thousands of open appointments across Canada, and this is mainly due to a change in donor behaviour,” said Gayle Voyer, the associate director for donor relations at Canadian Blood Services.

“We’re seeing a higher number of cancellations. In summer, we are seeing people enjoying holidays, enjoying company, beaches, all of those kind of things.”

The Canadian Blood Services says its blood inventory is low across the country due to a seasonal shortage in donors.

More than 1,200 people in the Edmonton area alone need to roll up their sleeve by the end of July in order to meet demand.

“You do need to be 17 years of age or older. As a male you can donate every 56 days and as a female every 84 days, and so that’s three or four times a year, up to six times for males,” said Voyer.

‘Make a difference in someone’s life’

Voyer says donating only takes about one hour out of someone’s day and “can make a difference in someone’s life.”

“You could help a family member, a friend, a neighbour,” she said. “And somebody who is maybe going through cancer treatment, heart surgery or other medical treatments that require blood and blood products. That hour can make a difference in someone’s life.

“We have seen an increase in demand certainly at points this year already. However, that sort of just ebbs and flows just based on what’s going on in the hospitals. What I can say is the need for blood is constant.”

It made a difference in Jakob’s life. His story was illustrated in a kid’s book, “In My Magical Bubble,” written by his mom.

Cover of children’s book “In My Magical Bubble” featuring Jakob Guziak’s story. (Courtesy: Paola Andrea Fernandez de Soto Abdulrahin)

His family hopes to inspire 50 people to donate a blood or plasma product.

“They can not be made,” said de Soto Abdulrahin. “We need the kindness and generosity of people out there to donate these life-saving products. Without plasma products or plasma donors, my son would be missing out on a very important part of his efficient immune system.”