ARMSTRONG — An Armstrong couple is hoping the generosity of the public will help ease the suffering of their baby girl.
Sixteen-month old Emma Tucker has canavan’s disease — a rare and debilitating genetic disorder that affects only 600 people in the world. The little girl can’t swallow or sit up straight. People with canavan’s will only live 4 to 10 years.
“We were devastated,” said Wayne Tucker, her father, when they found out. “For 2 weeks, our bodies felt we were in a massive car crash and we just lived through it everyday.”
On top of the stress of worrying about Emma, the couple also runs Tuckers Restaurant, a small diner in town. Wayne sometimes works 15 hours a day to make ends meet but with frequent visits to specialists in Vancouver, their restaurant often has to shut its doors.
“It was hard in the beginning because all the trips to Vancouver, there’s lodging, gas, food we have to pay for,” said Jennifer Tucker, her mother. “We have to close the restaurant to be able to do that so it was hard.”
Closing up shop means they can’t afford to get Emma what she needs, and what she needs right now is a specialized wheelchair van to transport her around.
“She’s very floppy, she has no strength,” said Tucker. “If you pick her up, the van will help transport her safely. and that’s my main concern for Emma is safety.”
So far they’ve raised about half of what the $60,000 they need through various charities,
There is no cure for canavans, the outlook is bleak but all the Tuckers are hoping for is a bit of relief for their baby during what little time she has left to live.
“Shes my world and I don’t know how long we’ll have her but as long as she’s here she’s everything,” said Jennifer.
“She’s the reason i get up every morning. even though she can’t talk or do some stuff other kids can do. Just a smile or a laugh or giggle it brightens your day,” said Wayne.
Anyone who would like to donate can go to their fundraising page:
https://fundrazr.com/campaigns/8a2r9
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