BT Calgary Blogs

As a parent, I can empathize with this family’s hard decision. I’m not sure I would be able to turn down an opportunity if I knew it would help my child. Yet, what about the risks?? Tough call. But this family made it.

Here’s the story.

One year old Jakob Bielskis can see the light in his light box. He turns toward it now – something he never would have done – before his trip to China.

His dad, Richard Bielskis says “we wanted immediate results and basically we got them to a certain extent – just different visual tactics we were trying to stimulate or get some kind of reaction from him and sure enough we did.”

Jakob’s mom Dawn Villeneuve agrees, “of course we want the best for our children and the way we looked at it – if he could see even light that that was going to be better for him than not seeing anything.”

So, last October, the family made the trip to China. Jakob received donated umbilical cord stem cells there in the hope they would help him see.
Jakob suffers from optic nerve hypoplasia…a disorder that’s untreatable in Canada. This is why after a lot of fundraising, the family took a chance.

“I don’t think anything in hindsight could have prepared us for all the emotion. We knew we were taking a big leap of faith, so ya know it was a little scary, ” Dawn admits.

But the family says the trip paid off.

He was a very happy child before the treatment, says Jakob’s dad, after the treatment he’s done way better than we could ever expect.
 
His mom says “I have zero regret about going. I think it has only benefitted Jakob. There has been absolutely no adverse effects from it.”

And they were careful not to have had unrealistic expectations.

His mom admits it would have been fabulous if they’d gone to China and Jakob would have been able to see his parents, but they understood that was not a realistic goal.

Jakob’s mom did a lot of her own research before she went over…. including talking to other parents who’s children had undergone the same procedure. It gave her some hope and  made her feel a little better – because she ran up against some serious concerns from doctors here.

Dawn says, “I was frustrated. Everytime I went to the doctor I felt beat down to be honest with you.”

And  U of C medical ethicist, Glenys Godlovitch, raises questions about the safety risks this family took by going to China.

They’re going to a place where they’re unfamiliar with whether the jurisdiction has regulations or whether that jurisdiction has safeguards in place.

Godlovich says it’s a classic case of “therapeutic misconception” – where just because a treatment is possible – people think it may be helpful.
She explains, “so even when told there may be risks, there may be unknown risks associated with the procedure  – the drive to get some benefit overwhelms and overrides any concerns about risk.”

But for Jakob’s mom – it was a risk she was willing to take.

“I tried to arm myself with as much information before we got too excited about it, and then we realized that was pretty much the only option for us, so we took it.”

And mom continues to look for more experimental treatments that could help Jakob.
Her second son Jaxon was born in
February. She has saved his umbilical cord blood hoping one day the stem cells from it could help Jakob – and maybe here in Canada.

For more information on Jakob’s story visit the family’s website

jakobsfightforsight.com