Calgary mother looking for Lymphedema cure outside of Canada to help son

CALGARY – Lymphedema is a chronic condition that affects about 300,000 Canadians.

It can have serious consequences if left unchecked.

There’s treatment available but now a local mother is searching for another solution, one that will lead to a cure.

At first glance, Tristan Tocila appears to be like every other three year old.

But if you look a little closer, you can see some differences.

It’s because he has what’s called primary Lymphedema, an accumulation of lymphatic fluid that causes the body to swell.

“He has most of the left part of the body swollen and it’s different sizes with the right part,” Tristan’s mother Ala Tocila said.

It can lead to severe infection or loss of the use of limbs.

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In Alberta, therapy is funded but there is no cure.

“I see differences. It’s not better, it’s worse. And I have to do something. What? I don’t know,” Tocila said.

One solution may be found outside Canada, where Tristan could be eligible for microsurgery.

“We try to do physiotherapy first and sometimes it helps but it never heals.”

For Tristan and his family it will mean flying to France, paying for the surgery and costs while he recovers.

But some believe more research needs to be done.

Doctor Andréa Cheville with the mayo clinic states in part in an email, “let the profession refine the techniques and clarify what training and experience are needed to optimally perform the surgery.”

Diane Martin was diagnosed with Lymphedema in 2002, she’s managed the symptoms with a compression sleeve and physiotherapy but agrees there needs to be more awareness.

“Doctors that go to school only get 15 minutes to a half hour on the lymphatic system. So there are very few doctors in Canada or the U.S that even specialize in Lymphedema,” Diane Martin said.

For Tristan’s mother, the focus is getting help for her little boy one way or the other.

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“I don’t want him to go to daycare and they ask why is this baby different? I just don’t want to see him like this. I want to see him run like a normal baby,” she said.

A national Lymphedema conference is being held in Calgary in October.