November 05, 2013 - 10:16 AM
"WE'RE CHERISHING EVERY MOMENT WE HAVE WITH HER"
ARMSTRONG - A group of grade five students at Highland Park Elementary School in Armstrong know Emma Tucker probably won’t live long enough to sit where they do today. They know she’ll never be able to sit up or walk around. They know her nerves are slowly fraying like melted straws.
They know more about a debilitating condition called Canavan disease than most people, and it’s all because of Emma, who is now 17 months old and has a life expectancy of only 4-10 years. Emma’s parents began noticing symptoms when she was a few months old. She couldn’t eat properly, couldn’t lift her head up. They found out it was Canavan disease, a rare genetic disorder that affects only 600 people worldwide and can only occur when both parents are carriers. Wayne and Jennifer Tucker of Armstrong are carriers but they didn’t know until Emma was diagnosed.
“It was devastating,” Wayne says. “Pretty much for a few weeks we felt like we were in a massive car crash, we didn’t want to do anything. But then, you have to deal with it, take care of her and go on with every day life.”
It hasn’t been easy, but community support has made all the difference. Donations mean the Tuckers can buy a wheel-chair accessible car, renovate their home with ramps and purchase other necessities to make Emma’s short life a comfortable one. For teacher and vice principal Shelly Cull, whose grade five class has fundraised over $1000, Emma has given the students something money can’t buy.
“They’ve learned how good it feels to help,” Cull says. “One student said it was so emotional to listen to the family talk about their child who clearly is not a typical child, how they had all the hopes in the world to have a daughter that would live a long life. She said it was so emotional to watch them try to hold back their cry.”
On an invitation from the school, the Tuckers visited the class and talked to them about Emma and how Canavan disease has changed their life. Cull says the kids haven’t stopped talking about her since.
“They’re very attached to Emma and can’t wait to have the family back so they can give them the cheque,” Cull says.
Students are involved in fundraisers like the Terry Fox Run and various global initiatives, but Cull says local causes and local action allow them to actually see the good they can do in their community. While she was the one who brought the idea forward, she says it was the students who really ran with it. They held bake sales and sold candy-grams to raise money. Some even went a step further, making web pages and selling drawings.
“It was sad for the kids, but it was a learning experience to know there are kids out there who are not typical,” Cull says.
After the van is bought, any leftover money will go to the creation of a sensory room for Emma, who can’t see very well.
“Her hearing is good, so that’s usually how we play with her,” Wayne says. “We make noises with her... there’s simple stuff like the crinkling of a grocery bag, things like that.”
The Tuckers are grateful for the donations, and deeply touched by the affection Cull’s class has for Emma. There is no cure for the disease and little funding for research because it affects so few people.
“It’s not something we would change, she makes life that much more special and we’re cherishing every moment we have with her,” Wayne says.
Emma's parents, who own Tucker's Restaurant downtown Armstrong, are hosting a silent auction Nov. 3-9 featuring a variety of donated items, as well as a benefit concert and dinner Nov. 9 from 4-9 p.m. at the restaurant. Cover charge is $5 for adults and $2 for kids. Check for updates on how Emma is doing on her Facebook page and visit her website to make a donation.
To contact the reporter for this story, email Charlotte Helston at email@example.com, call (250)309-5230 or tweet @charhelston.
Shelly Cull's grade five class at Highland Park.
(CHARLOTTE HELSTON / iNFOnews.ca)
News from © InfoTel News Ltd, 2013