Jacinda Hodder formally diagnosed with cerebellar ataxia at U.S. hospital
It took her practically two decades, but Jacinda Hodder has finally found an answer.
© Paul Herridge Photo
Jacinda Hodder (right) of Port au Bras was formally diagnosed with cerebellar ataxia at John Hopkins Hospital in Baltimore, Ma., this past May. Her younger sister, Janika, also has the same symptoms, which include a progressive loss of motor skills.
The young Port au Bra woman believed she had a form of ataxia, a group of neurological disorder that affects coordination, balance and speech.
Doctors in this province weren’t exactly sure, and even after travelling to prestigious hospitals in Canada, she never received an official diagnosis.
After numerous medical appointments, starting when she was just five, a doctor at John Hopkins Hospital in Baltimore, Md., agreed to take over her case last year.
The now 26-year-old, her mother, Rhonda Hodder, and her aunt, Jackie Thornhill, who organized the trip and helped coordinate the fundraising effort required, returned to Newfoundland last month after several weeks in the U.S.
There are presently over 50 documented types of ataxia, each with their own specific causes.
During the trip, Hodder was formally diagnosed with cerebellar ataxia, a genetic form of the disorder affecting the brain’s cerebellum.
As Thornhill explained it, her niece has two “sick” genes that are essentially attacking her body, affecting her muscles and causing vitamin deficiencies.
Although she’ll never be able to walk again as hoped, Hodder, whose younger sister Janika has the same symptoms, said the trip was an accomplishment.
“I never got the answers I was hoping for, but at least I got something,” she said.
Hodder was placed on new medications to stabilize her symptoms and was shown a variety of exercises she can do while in her wheelchair. She recently purchased an exercise bike, which she was told would also help.
“I’m happy I know what I’ve got now. I’m happy my medication may help me slow down progressing,” she told The Southern Gazette at her home Tuesday, noting the doctor at John Hopkins wants to see her again at in the future, along with her sister.
“That was what we wanted to hear, something like that,” Thornhill added.
Hodder and her family offered gratitude to all who made the medical trip possible. Numerous fundraisers were held in advance of the expensive journey and donations poured in from a variety of sources.
“I wish I could have a big party and thank everyone, but you’d never fit them (in one place),” Hodder said.
Thornhill, who said the trust fund for her niece remains open at Scotiabank, acknowledged, “We had great support.”