Waterloo woman releases original song as Huntington fundraiser

Huntington disease has taken a lot from Vicki St. Amand: her ability to move freely, speak easily and live independently - not to mention the lives of her mother and sister.

But the degenerative brain disorder has also given her something: a voice, and one that she's sharing with the world in song.

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On Friday, St. Amand released her first recorded song, a track titled Gonna Be OK.

"Music soothes the soul," St. Amand told CBC News. "I've got thousands of songs on my phone. But my favourite is mine."

Expression through music

The song describes some of the emotions St. Amand has had to work through since being diagnosed with Huntington disease.

I realized one day that she just had so much stuff that she just didn't know what to do with.- Melissa Jessop

"I kind of went into a shell and was really depressed and everything. I didn't want to get up. I didn't want to eat," she recalled.

Then St. Amand met Melissa Jessop, a music therapist at University Gates, the long term care home where she lives.

"I realized one day that she just had so much stuff that she just didn't know what to do with," Jessop told CBC News.

"At one point she mentioned she was feeling very down and depressed and I said, 'I don't think it's healthy to stay here in that valley.'"

Finding her voice

That's when the two women started writing songs together. At first, they wrote new lyrics to popular songs. Then, Jessop said they started singing some of the songs St. Amand's mother wrote when she was alive.

"That was wonderful, because Vicki found her voice," Jessop said. "She developed a level of confidence with herself and her voice, and then wanted to basically strike out on her own singing these songs that were so important and meaningful to her."

After singer her mother's songs, St. Amand wanted a song of her own not only as a way to work through her emotions, but also as a way to raise money to research a cure for Huntington disease.

For a better future

"I don't have too long to live," she said.

"My son and my granddaughter also tested positive for Huntington [disease]. I'm just thinking I have to do something to make the world a better place for my children and anyone with Huntington disease," she said.

"That's why it's important for me to get a beautiful song with meaning, that it doesn't matter what you're going through that day, as long as you can listen with emotion to music, it doesn't matter. Everything is OK."

The song, which is based on the careful notes that Jessop has taken over the years during her conversations with St. Amand, was released Friday.