‘This disease has quite literally imprisoned us’: ALS prompts family to seek community support

SEMINOLE COUNTY, Fla. — A Lake Mary family needs the community’s help in raising money to purchase a wheelchair-accessible van for a loved one battling ALS.

Viviane MacDonald, 48, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, in 2018.


McDonald, a mother, has since been confined to a wheelchair and has lost her ability to speak.

Her husband and caretaker, Brian MacDonald, shared his struggles with WFTV’s Christy Turner.

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“It tears me up inside because so much has been taken,” he said.

ALS is a terminal disease that attacks the nervous system and leads to paralysis. There is no treatment or cure.

“Nothing in life can prepare you for a situation like this,” MacDonald added.

Vivi’s priority now is to enjoy life and spend time with Brian and their two children, ages 7 and 11.

But the disease makes it difficult to do anything.

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“This disease has quite literally imprisoned us in our home,” MacDonald said. “We never go anywhere.”

The family desperately needs a van that can accommodate Vivi’s wheelchair to help her get around.

“Being able to go out and enjoy each other as a family again ... is going to give us all the strength to keep pushing forward, to keep Vivi around. Keep her alive. Keep her happy and smiling,” MacDonald said.

MacDonald explained that insurance won’t cover the cost of a van.

The family partnered with the nonprofit “Help Hope Live” to raise money for a van, but they need the community’s help.

MacDonald said the van would make life easier and help the family make memories her kids can cherish.

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“I don’t know how much time she’s got, so we want to enjoy it, you know, give the kids some lasting memories,” MacDonald said.

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