Neighbours rally around 10-month-old boy with rare — and terminal — genetic disease

In a unassuming trailer in Country Lane Estates located on the north end of Aldersyde, Katie Zipser and Brendon Macleod have to give their 10-month-old son Tucker nearly 24-hour care.

That’s because Tucker suffers from a rare and terminal disease called D-bifunctional protein deficiency which, according to the U.S. National Library of Medicine, is a disorder that causes deterioration of the nervous system with symptoms such as muscle weakness, loss of skills such as following movement with the eyes, controlling head movement, loss of sight and hearing and frequent seizures.

Tucker, who experiences upwards of 30 to 40 seizures a day, was given just a few months to live. The fact he is still here today proves he’s a fighter, according to his mom.

“He’s a strong little guy,” explained Zipser. “He’s already given us eight more months than we were supposed to have.”

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Ten month old Tucker suffers from a rare genetic disease called D-Bifunctional Protein Deficiency that causes deterioration of the nervous system, frequent seizures,, loss of hearing and sight and eventually is fatal.

There have been plenty of challenges for the young family, from finding a place to live and a vehicle that meets their needs to plenty of out-of-pocket medical expenses.

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“In the beginning we struggled a lot with just trying to find some kind of car seat, car bed,” Zipser said. “Just something he can be in so we can get him to and from appointments… which he has a lot of.”

Because of Tucker’s need for nearly 24-hour care, neighbours in Country Lane Estates didn’t realize Katie and Tucker were around.

“We we’d just see the vehicle come and go,” explained Cheryl Williams, who lives nearby. “But we didn’t know, unbeknownst to all the community members that Katie and Tucker were inside the holiday trailer all summer.”

Upon hearing of the struggles faced by Tucker and his family, Williams and the rest of the neighbours decided they needed to help.

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In a matter of days they collected nearly $4,200 for Tucker

“Tucker needs help. He’s terminal,” Williams said. “As parents they’ve just dedicated everything to him, and it’s beautiful.”

Zipser and Macleod say they were stunned by the generosity of their neighbours.

“Gratitude,” exclaimed Zipser. “Unbelievable gratitude for every single one of them and just everybody along the way that has been so great to us, to Tucker.”

So far Tucker’s neighbours have raised $4,200 for his family. Amongst their immediate needs is a new place to live for the winter and a car seat that will allow Tucker to lie flat.

The family is hoping to find more suitable accommodations this winter as living in a RV isn’t ideal. Meanwhile, Williams and the rest of the neighbours in Country Lane Estates aren’t done yet. They’re continuing to raise funds for the family as they continue to care for Tucker.

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