Ontario family pleads for funding to buy device to help daughter, 2, with Rett Syndrome

Two candles in a cupcake set the scene for Mackenzie Mailling’s second birthday.

Her parents Stephanie Mailling, 31 and Ryan Mailling, 31, sang happy birthday – but it’s been a difficult few months for the young Mississauga family.

“To hear your daughter’s not going to walk, talk or feed herself, I think it needs some time to sink in. When it’s one in 10,000 you really don’t think it’s going to happen to you,” said Stephanie.

Mackenzie was diagnosed with Rett Syndrome in August, a rare disease that attacks a child’s motor skills. There is no cure. Mackenzie had just started to talk when the disease stole her speech.

“Words like ‘Momma,’ simple words that we all take for granted,” said Stephanie.

The family is hoping to communicate with their daughter once again thanks to the technology in the Tobii computer.

The large tablet-looking device tracks Mackenzie’s eye movements allowing her to to communicate simple words and phrases.

The child-like computer voice is activated when Mackenzie’s eyes pass over the speech icons such as “eat,” or “I don’t want this.”

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The Tobii device is currently on loan to the Mailling family from the manufacturer. It has a cost of more than $20,000 and is not covered by OHIP.

“Assistance and support is lacking in general and it even seems there is quite a shortfall of funding,“ said Ryan.

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When pressed for comment, the Ontario Ministry of Health sent this statement to Global News:

“The Ontario Health Insurance Plan (OHIP) does not fund or insure devices. The Assistive Devices Program (ADP) provides funding assistance for eye tracking devices. An ADP-registered authorizer will determine which eye tracking device is most appropriate for the applicant during an assessment at an Augmentative and Alternative Communication (AAC) clinic.”

Ryan said ADP funding means wait lists, various assessments and then determination of coverage. The family has set up a GoFundMe page to help with the purchase of the Tobii device and ongoing physio therapy that costs $150 an hour.

The hope is that Mackenzie will be able to one day walk independently and communicate with her family via the technology.