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Evan’s Journey Ended in the Arms of his Loving Mom

Evan’s Journey Ended in the Arms of his Loving Mom
Published on Sunday, 6 December, 2015

Brantford Expositor
vincent.ball@sunmedia.ca
 
A seven-year-old St. George boy who captured the hearts of thousands has died at the Stedman Community Hospice in Brantford.  The hospice said that Evan Leversage, who battled brain cancer most of his life, died Sunday morning in the arms of his mother, Nicole Wellwood, who had been sleeping by his side in his hospice bed. He also was surrounded by family members, who have kept a vigil since Evan was admitted to the hospice on Nov. 4.
 
"His smile, his laughter and the impact he has had on my life, that's what I will remember most about Evan," Wellwood said Sunday night.  "The impact Evan has had on the world in his seven years is further reaching and more enduring than most souls who get to stay here 10 times longer," she said in a statement.  "Without eloquent speeches, profound wisdom and doing anything more than being himself, he stirred hearts around the world, "His quiet bravery, simple wishes and signature thumbs up, inspired caring strangers to reach out in love and support.
 
"He came to represent all children and families who struggle with health issues, especially childhood cancer."
Evan was born in Stratford to Wellwood and Travis Leversage. He has an older brother, Logan, and a younger brother, Tyson. Wellwood moved to St. George with the boys about three years ago.  Just two days before his second birthday, Evan was diagnosed with an inoperable brain tumour.  He spent a lot of time in hospital and at medical appointments but endured the endless rounds of chemotherapy with courage, patience and good humour,  said Wellwood. 
 
"Evan was a typical little boy who loved Sponge Bob, Pokemon, Batman, Lady Gaga and practical jokes," she said. "He loved animals - horses, rabbits and especially dogs.  "He greatly loved having a big brother in Logan and a little brother in Tyson."  Evan also took a special interest in big trucks and emergency vehicles and those who drove them.
 
In September, doctors told Evan's family there was nothing more they could do for the boy. They recommended that if Christmas was important to Evan, the family should move the celebration forward.

In October, the people of St. George and the surrounding area banded together so Evan could experience one last Christmas. The event included a Christmas parade with 25 floats, police and fire vehicles, a pipe band and Clydesdale horses.  The village sported Christmas decorations and snow machines were brought in to blanket part of Evan's street with snow.  The boy got to hop onto Santa's sleigh and ride with him through the streets of St. George with thousands of townspeople looking on.
 
It was a massive undertaking that attracted lots of media attention and put the spotlight on Evan and childhood cancer. The event also attracted international attention through a Facebook page called Light Up St. George.
The boy's story attracted international attention with people reaching out from as far away as Australia and the United Kingdom, among other places.
 
"One of Evan's favourite things to do was to have his family read all the mail that he received from caring people around the world. The family was told by the St. George post office that Evan has received even more mail than letters to Santa," said a statement from the hospice posted on its website.
 
Evan's story also caught the attention of Ontario Lt.-Gov. Elizabeth Dowdeswell, who sent a letter. "Evan, thank you for being the Christmas Angel the world needs now," it read.
The Brain Tumour Foundation of Canada joined with his family earlier this year to launch a fundraising campaign to support research into childhood brain cancer.  Wellwood said that Evan's legacy is one of hope.  "Hope that other children who are on his path are not shortchanged of a full and rich life," she said.  "Hope that other families do not have to go through such pain and suffering and say goodbye to their children. Hope that love always shines the brightest."
 
Social media was flooded with condolences Sunday.
"RIP Evan Leversage. You did what most of us never will -- you brought a community together in love," one person posted.
 
Visitation for Evan will be at Providence Free Reformed Church, 269 St. George Rd., St. George, on Tuesday from 7 p.m. to 9 p.m and on Wednesday from 2 p.m. to 4 p.m. and 7 p.m. to 9 p.m.  A funeral service will be held at the church Thursday at 1 p.m.  Funeral arrangements are being handled by Dennis Toll Funeral Home, 55 Charing Cross St. Brantford.  A link to a livestream of the funeral service can be found at www.dennistoll.ca.

Dementia experience a humbling eye-opener - Brant News - Nov 19, 2015

Dementia experience a humbling eye-opener - Brant News - Nov 19, 2015
Published on Thursday,19 November, 2015

Photo by Olga Consorti, For Brant News

Brant News reporter Brian Shypula holds plastic container during a simulated dementia exercise at St. Joseph's Lifecare Centre. The goggles and gloves were intended to mimic some of the health and mobility challenges experienced by senior.

Brant News

By Brian Shypula

I failed, miserably. And hopefully I’m a better person for the experience.

Tasks like putting away laundry and counting golf tees should have been a piece of cake. Instead, they were a plate of humble pie.

I volunteered to take the Virtual Dementia Tour at St. Joseph’s Lifecare Centre this week and write about it for the Brant News.

P.K. Beville, a geriatric psychologist and founder of the non-profit seniors advocacy group Second Wind Dreams, created the Virtual Dementia Tour, an experiential kit used to simulate the symptoms of age-related Alzheimer’s and dementia, to help caregivers better identify and cope with patients’ behaviours and needs.

I was eager to learn. Like many families, mine is touched by dementia. My mother-in-law Mary has Alzheimer’s. My uncle Walt, too. It’s heartbreaking to see them drift away from who they were.

Nicole Zinn-Schadenberger, a psycho-geriatric resource consultant with the Alzheimer Society, prepped me for the tour.

She put popcorn kernels in my shoes to make it uncomfortable to walk, just like a senior could experience from bunions or side effects from diabetes.

Weights attached to my right wrist and right ankle mimicked the after-effects of a stroke or injuries from a fall.

Special goggles simulated cataracts. It was like walking around in dense fog.

Cotton balls were stuffed in my ears to make it harder to hear.

Finally, I wore latex gloves filled with cotton and popcorn kernels. On my right hand, my thumb and index finger were taped together. A stick prevented me from bending those digits. On my left hand, the index and middle fingers got the same treatment. The idea was simulate osteoarthritis or injuries from a fall. I had little ability to grip things.

Oh, I almost forgot the walker.

I was led to another room and given five tasks to accomplish in five minutes: match and fold laundry in a laundry basket; remove and replace lids on a set of plastic containers; count the number of golf tees in a box; spread jam on two crackers…. The last instruction was deliberately muffled and I couldn’t hear it. No repeats of questions allowed.

All along there were loud voices and music, like a TV set cranked up and forgotten. A flashing red strobe light added to the disorienting atmosphere.

I found the plastic containers first and knocked at least one off the table in my new clumsy state. Some didn’t have lids. Why were they there? I could barely pry off the lids using my pinky and ring fingers.

Sort and fold laundry? I couldn’t even find the basket through my hazy vision.

Golf tees? Again, I couldn’t find the box through the cataracts, even though it was cleverly marked in a golf ball design.

Crackers and jam? I was toast.

As a reporter I like to believe I’m good at listening and remembering details. Not hearing the fifth task, I think, increased my anxiety from the start. People experience elevated blood pressure during the tour. I was having trouble remembering the other assignments.

I consider myself an easy-going person, but at the same time I don’t like to lose, whether it’s in sports or the office election pool. So scoring zero for five in the tasks was humbling.

Frustration gave way to some anger when I realized I wasn’t going to get anything done. Then apathy set in. Time was running out and I didn’t care.

In the post-mortem with Zinn-Schadenberger, I learned that my experience was pretty typical.

I tried to rummage through almost everything in the room. It’s a common behaviour for someone with Alzheimer’s. I had the shuffling gait, too.

"People who have dementia might wander into other people’s rooms or might be looking for something. They’re looking for something familiar,” Zinn-Schadenberger said.

But even if they find what they’re looking for, they might not remember they were looking for it.

Difficulty understanding instructions is another common experience for someone with a dementia. It’s a good lesson not to walk away from someone you’re speaking to.

"We just have to be conscientious of knowing that there are reasons why people do the things they do, Zinn-Schadenberger said.

"All behaviour has meaning.”

ST. JOSEPH'S EXPERIENCE

About 80 per cent of staff members at St. Joseph’s Lifecare Centre have taken the dementia tour. They include direct caregivers and support staff like housekeeping.

"It was eye-opening,” said Jen Utley, a business clerk who took the tour the same day.

Although Utley doesn’t provide care to patients, there is interaction. One resident often asks her if he is paid up in his rent.

"I’ll tell him 20 more times if I have to in a positive way. I don’t want to him to feel that I’m losing patience with him,” she said.

The experience was a good reminder to practice compassion in cases like someone fumbling for change in a checkout line, she said. They might have one or some of the physical challenges simulated in the test.

Derrick Bernardo, president of St. Joseph's Lifecare Centre, recently participated in a provincial roundtable discussion on gaps in dementia care.

"One of the biggest things is educating our community,” he said.

St. Joseph’s would like to partner with the Alzheimer’s Society to bring the Virtual Dementia Tour to the public, including school visits.

"Really the goal is to have just a more compassionate community,” said Olga Consorti, president and CEO of St. Joseph’s Lifecare Foundation, which fundraises to make the Virtual Dementia Tour and other improvements to St. Joseph’s dementia unit possible.

For example, residents’ rooms have a number and street name, just like their old addresses. They include Lilac Lane and Bluebird Terrace, with matching colour coding intended to trigger familiarity for the residents and their families.

"A lot of those enhancements that we have were chosen by the residents themselves,” said Jennifer Miller, director of care.

The dementia unit has themed activity areas. They’re called "resident home areas” in the industry but St. Joseph’s prefers to call them "neighbourhoods.” They include a "market” room with replica food items to simulate shopping. The "garage” lounge conjures the car era of residents’ heyday, with an old-fashioned gas pump, vintage signs and automotive advertising.

A Snoezelen room provides sensory stimulation through various sights, sounds and smells.

Colourful murals blend walls with doors at elevators and exits, intended to distract residents from trying to leave, another common behaviour in dementia patients.
Virtual Dementia Tour Creates Awareness - Expositor; Nov 17, 2015

Virtual Dementia Tour Creates Awareness - Expositor; Nov 17, 2015
Published on Tuesday,17 November, 2015

Click Here to read the article.
Random Acts of Kindness as simple as coffee and tea – Article on Nov 6, 2015

Random Acts of Kindness as simple as coffee and tea – Article on Nov 6, 2015
Published on Tuesday,17 November, 2015

Photo by Sean Allen, Brant News


St. Joseph’s Lifecare Centre residents Bea Sutton and Shirley Ivory enjoy coffee, tea and sweets delivered by RBC’s Narima Whitman, Ryan Enyedi and France Thibeault as part of Random Acts of Kindness Day on Friday at St. Joe’s.


Taking part in Random Acts of Kindness Day was billed to be as simple as buying someone a coffee.

That was certainly a popular theme on Friday as the Brant Community Foundation and Random Acts of Kindness committee encouraged residents in the community to perform simple acts of kindness that could then be paid forward by the recipient.


RAK committee chair France Thibeault and some co-workers from RBC decided to drop in on the current events group at St. Joseph’s Lifecare Centre with some coffee, tea and treats from Sweet Bakery.


The group of 10 residents and the long-term care home was happy for the visit after just finishing a crossword puzzle as a group.


Brantford Police and County of Brant OPP officers used coffee to be kind, too.


Officers were handing out Tim Hortons cards donated by the Brant Community Foundation during the day.


One "kindness chain” shared on the RAK Facebook page started with coffee in the morning and ended in chocolate suckers after being passed on four times at local businesses Smashing Pixels, Jack Rabbits, The Closet Door and Lock and Key Treasures.

 

Sean Allen is a reporter at Brant News. Connect with him on twitter @seanard
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