‘Every child deserves a chance to grow up’: B.C. mom fights to get son treatment overseas

A B.C. mom says she will do anything to help her son get treatment overseas.

“He’s beautiful, he’s kind, he’s loving,” Natasha Hepburn said. “He loves playing with his brother. He loves going to the playground, just being silly. He talks about growing up and what he wants to be when he’s older.

“He’s just a happy child, a happy, wonderful child,”

But Hepburn is worried her son may not get the chance to grow up.

Her now nine-year-old son, Nathan, had a seizure in 2021 and she noticed he was having staring spells.

He was later diagnosed with brain arteriovenous malformation, AVM, which is a rare and life-threatening condition where abnormal blood vessels in the brain can rupture without warning. A bleed can cause permanent brain damage or be fatal.

“In 2023, the summer of 2023, his amazing, remarkable physicians, like they did everything; they tried radiation to treat his lesion,” Hepburn said.

“Unfortunately, his lesion didn’t respond. And you know, there’s just something to do with the biology of his lesion; it didn’t show any treatment response. Six months passed, and we’re continuing to monitor and he developed significant brain swelling, and he had left-sided weakness. And then we were told that he has developed an aneurysm that’s bleeding.”

Hepburn said they took Nathan on an emergency flight to Toronto and a team of neurosurgeons saved his life by successfully embolizing the aneurysm and stopping the bleed.

“They saved his life,” she said. “And I’m convinced if he was anywhere else in the world, this wouldn’t be done. It’s because of their skill level and just how fast they acted.”

However, the lesion wasn’t gone and Hepburn said her son experienced significant side effects. He developed a clot in his femoral artery and was in excruciating pain.

“I can’t even like tell you, he couldn’t walk a block without screaming, like he was in excruciating pain,” Hepburn said.

“This extended his hospital stay, and he had to get injections for months on end to dissolve the clot, and eventually it did dissolve, but I don’t know if we can use that access site anymore.”

Now, every three months, Nathan gets follow-up MRIs to see if the lesion will respond to the radiation, but there has been no change and has even had micro-hemorrhages, indicating that the lesion is becoming more unstable.

“It is a ticking time bomb, because you never know when this lesion can rupture,” Hepburn said.

“It could rupture when you’re sleeping. It could rupture when you’re eating, when he’s at school. You know, it can go off at any time. And a lesion in the thalamus, it’s.. he’ll lose his life. You know, he will lose his life if it ruptures, or he’ll have significant neurological effects.”

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Hepburn said they needed to look for any other potential treatment options.

“What can I do as a mother to help my child, you know, because living with this condition, with this ticking time bomb in his brain, it could go off at any time,” she said.

“It’s not easy. Every day we live with fear. Every day we live with fear, with the anxiety (that) any time he has a headache or he says ‘My head hurts’ or he’s feeling unwell, my heart literally drops to my stomach and I think, is this going to be the day that I lose my child, you know, is this going to be the day that my precious child is no longer with me?”

2:01 Access to life-changing treatment

She came across an article by Dr. Rene Chabot, an interventional radiologist in Germany who has pioneered a new embolic agent called Obtura. It works like glue, so anytime a brain is bleeding, they can inject the glue into the blood vessels to stop the bleed or close it off.

“It could save his life, because it’s very different than the embolic agents or glues that we have here in North America,” Hepburn said.

“So this doctor, he pioneered an approach called transvenous embolization. And he’s treated these lesions before. He’s treated complex lesions of this nature many times, like 50 times before. And he’s shown me, he’s shown me other cases that were very similar to Nathan’s that he treated effectively.”

Hepburn said Chabot told her that he is highly confident that Nathan can be cured with his method.

“Hearing that as a mother, you just, you feel so hopeful, but at the same time, there’s the uncertainty of, how are we going to afford it?” she added.

The treatment costs about $61,000 each time and depending how Nathan responds to treatment, he may need between three and five treatments.

The neurosurgical team from Vancouver and Toronto has written letters and applied to the B.C. government to help fund Nathan’s treatment.

Hepburn has also started a GoFundMe.

“He’s my child,” she said. “Every day we’ve been living with this and just wondering how long do we keep this ticking time bomb before it goes off and he loses his life like many others before him?”

“It’s very hard when you know, when you have an expert, a pioneer in the field, telling you that they have an effective treatment available and they can help your child, and you’re worried that he may not be able to access the care that he needs because of finances.”

Hepburn said that initially, she didn’t even think about the price as she was so hopeful they might have found a cure.

“When reality set in, it was scary,” she added. “It was very scary. I was just thinking, how am I going to do this? You know, as a single mom working a full-time job, taking care of two boys.”

Hepburn said the treatment is not available in Canada, so they contacted Health Minister Josie Osborne in January, but have yet to hear back.

Osborne’s office confirmed to Global News that they did receive the application, but not to make travel plans until they hear back.

Hepburn said they don’t have the luxury of time.

“He could lose his life while I wait and if I don’t act as a mother and I just put it on the back burner and just wait, what if he loses his life in that interim?” she said.

“I don’t want to wake up one day and have regrets that my child passed away, knowing an effective treatment is available.”

2:23 Charleigh Pollock’s family relieved after funding restored for drug treatment

Hepburn says Nathan knows something is wrong with his brain, but they try to keep some details from him as he’s so young.

“He has to get MRIs every month and a half to three months, under general anesthesia. He comes out screaming and crying, confused. You know, it’s been very hard on him, very hard on him, and hard on me, as his mother, watching him go through that,” she said.

“If I could change places with him, I would.”

Hepburn added that this condition has robbed her son of his childhood.

“He has somebody with him at all times monitoring him,” she said.

“He gets a headache, we have to go to the hospital. He gets MRI scans every three months. He’s endured more pain than any child should at his age. You know, with the treatment, there comes complications, and he endured a lot of pain following it, but the AVM still isn’t gone. It’s there, and now we have a path forward. We have a path forward, and I feel strongly that we need to take it.

“Every child deserves the chance to grow up. Nathan deserves that chance.”