Jacinda and Janika Hodder get mystery illness diagnosed in U.S.

Two sisters from Newfoundland's Burin Peninsula finally got a diagnosis for their mysterious illness, but they didn't get the answers they were hoping for.

Newfoundland sisters helped by $50K in fundraising learn they have brain disorder cerebellar ataxia

Jacinda Hodder of Newfoundland and Labrador says she was hoping for a curable diagnosis for a mystery illness she has had for 20 years. She learned in the U.S. that she has cerebellar ataxia - damage, degeneration or loss of nerve cells in the part of the brain that controls muscle co-ordination (cerebellum). (CBC)

Two sisters from Newfoundland's Burin Peninsula have received a diagnosis for a mysterious illness thanks to doctors in the United States, but they didn't get the answers they were hoping for.

Jacinda Hodder, 25, from Port au Bras, started gradually losing her motor skills two decades ago.

After testing in Newfoundland and Ontario, a specialist in Baltimore diagnosed her illness as cerebellar ataxia.

"It's really frustrating and confusing. I went 20 years and didn't know what I had, and I went up to the states and found out right away," said Hodder.
Janika Hodder, left, and Jacinda Hodder say they're coping with their cerebellar ataxia diagnosis. (CBC)

Ataxia is caused by damage or loss of nerve cells in the section of the brain that controls muscle co-ordination. Her younger sister, Janika, shows the same symptoms.

Jacinda Hodder started having problems when she was five years old, and now uses a wheelchair and has trouble speaking.

"It wasn't the diagnosis I was hoping for. I was kinda upset that day when I got it because it isn't a curable disability," said Hodder. 

"I was hoping for something curable — I was hoping it wouldn't be ataxia, but it was. I guess it's good, in one way, to have a diagnosis so we won't be wondering all our lives now."

However, Hodder may never know the cause of the ataxia. The illness is sometimes linked to a tumour or a disease like multiple sclerosis, or could be genetic.

Sisters coping with diagnosis

The doctors at Johns Hopkins Hospital in Baltimore want to see Janika Hodder as well, to prevent her condition from worsening. 

Janika Hodder will go to St. John's in September for blood work. Both sisters will go to the U.S. within the next year or two so doctors can monitor their condition.

They're trying to stay as healthy as possible and stay positive.

"There's nothing I can do. I gotta live with it. Me and my sister will just cope," said Hodder.

Local people have raised $50,000 through fundraisers to help pay for the sisters' visit to American doctors, and they say they're thankful for all the community support.