Vaudreuil mother of terminally ill baby pushes for better healthcare

UPDATE: Baby Ellie passed away on Oct. 15, Global News has learned. A funeral service will be held on Sunday, Oct. 18.

VAUDREUIL – Baby Ellie Fauteux rests peacefully in her crib in her Vaudreuil home, but her short journey so far has been full of unrest.

After Ellie was born, her mother Ilyssa Shaffer noticed Ellie was having an episode.

“These were movements that were just unexplainable,” she said.

“I could not justify the severity of them.”

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It was only after months of visits that doctors figured out what Ellie had: a rare mutation of the KCNT1 gene, most commonly known as MMPSI (Malignant Migrating Partial Seizures in Infants), a disease that affects her muscle tone and gives her seizures.

“It’s not the type of seizures that you would generally think of; it’s a swing to one side, every single muscle in her body becomes stiff, her eyes start rolling to the back of her head,” Shaffer explained.

She sought help from her local CLSC for respite care and was put on a list back in October 2014.

“She’s struggling, so… I didn’t expect to have to wait 11 months,” said Shaffer.

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That is most of Ellie’s life.

Now, in what doctors say are her final days, a nurse and a doctor from the CLSC have finally been assigned to her case.

“It’s really important when we receive the request, we can go the same day,” said Dr. Chantal Anctil, the family doctor from CLSC Vaudreuil assigned to their case.

The problem is getting that request to their department (palliative care) and it’s what frustrates Shaffer and her family.

“It’s been a roller coaster ride, since the day the baby was born,” said Rona Schaffer, Ellie’s grandmother.

Vaudreuil is the fastest-growing community in Canada, but in terms of care, a single CLSC is available to the area.

The government has made promises to open up a hospital, but plans have been on hold since 2013.

A spokesperson for Lucie Charlebois, MNA for Soulanges and Minister for Rehabilitation, Youth Protection and Public Health told Global News an announcement on the hospital is coming soon.

And although it might be too late for baby Ellie, her mother is urging others to push for better care off-island.

“Push. I didn’t push because I didn’t have the energy and I didn’t have the time to sit on the phone for 45 minutes, to be on hold,” she said.

“I thought my time would be better spent holding my baby.”

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“We just want people to know we need better services, for our children, for our families,” said Rona Shaffer.

“We’re coming forward, but I guarantee there’s lots of other people who have just gone down that black hole and are not getting the help.”

A Gofundme campaign has been set up to help cover Ellie’s care costs.

“If it wasn’t for the support of people, there’s absolutely no way we could’ve done this,” said Shaffer.