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Archive: December, 2012

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Eat Your Dessert First

The following was compiled by Susan Lipkus who attends the Edmonton Safeway Walk for Muscular Dystrophy with her family as part of her friend Sharon’s daughters’ team.  Susan is looking for submissions for the “Eat Your Dessert First” cookbook.  Get in touch with her to make a contribution.

Sharon and Susan-Edmonton Walk2Sixteen years ago, I met my inspiration for a cookbook I hope to call “Eat Your Dessert First.” Her name is Sharon Dempster. We formed a friendship that lasted a lifetime…Sharon’s lifetime to be exact. Sharon had muscular dystrophy. If you were blessed enough to had met her, you would see an angelic beauty with blonde hair, sky blue eyes and the warmest smile all accompanied within a frail-like body. If you were blessed enough to know her, you would have seen all of that outside beauty but you would have been confronted with a strength and power that I myself cannot describe. Aside from muscular dystrophy, Sharon had a heart transplant, too many medical issues and hospital stays for even the strongest of human beings. Throughout all of this, her smile never faded and she was the first person to offer an ear to anyone. She was also a mother who loved her children, Melissa and Michelle, beyond words. Sharon was a woman who lived her life on her own terms. What I would like to accomplish is a cookbook that reflects the insurmountable strength of people like my friend Sharon. She taught everyone who knew her that you have to grab on to the ride of life and ride it while hanging out with everything you’ve got.

I am looking for anyone who has been challenged by the unfairness of sickness. Whether it be a family member, a friend, a mentor, a lover or yourself. It would be a great tribute to hear your story or the story of someone you know or someone you knew and include their favourite dessert recipe with a picture of the dessert. I would be honoured to compile these stories and recipes and put together a heartwarming cookbook to honour our heroes. I will do everything in my power to get this gem published. I would like to donate 50% of the books revenue to the causes and foundations represented in this cookbook. Let us honour our heroes by eating our dessert first.

Contact information:

Email:
susanlipkus@hotmail.com

Phone: 780-460-0371 or 780-907-2900

 

Sharon’s Story

Written 12 years ago when the idea of the cookbook was first mentioned.

While some people may feel sorry for the way I am or that I’m strong to endure, I can’t feel that way. I’ve always had muscular dystrophy, it’s part of who I am. I can be frustrated by a particular situation or event, but I can’t imagine myself with normal muscles. In comparison to my divorce with all it’s feelings of failure and uncertainty, my muscle disorder seems to pale, and those challenges seem to be downright inconsequential in the light of finding myself in heart failure raising two very young children on my own. Nothing, absolutely nothing, compares to heart failure, and transplant surgery as a means of testing your stamina, your determination, and your reason to live.

It is two days before Christmas and this particular morning I am taking my children for the first time to one of my many heart transplant clinics. They’ve never been before; I’ve tried to shield them from this. I have been waiting for a heart for nearly a year, and lately I have been feeling that I might not make it to transplant. I feel my body is slipping fast now and each day brings things further down. So today I plan, methodically plan, to bring my kids to my heart clinic. I need the doctors and nurses to see my kids; to realize they are not a notation in my chart, but flesh and blood and so very young. They are real and we exist as a family. The heart is for all of us. And so today they come with me, all dressed up and primped with hair ribbons. Oh, the staff ooh and aah.

At 10:00 p.m. that night, the kids are laying down but so wired and not even close to sleeping. All night the phone won’t stop ringing and in exasperation I think “let the answering machine take it”. Then we hear my mother’s voice calling me to pick up the phone now!! My eldest hands me the phone and my mother says “They’ve got you a heart, Sharon.” I hop up and tell the girls the good news and they are ecstatic. “It’s because we were so good this morning, isn’t it?” they ask. Almost immediately we realize I won’t be home for Christmas. This is it! Surgery! Then the floodgate of tears, worry and fears open. I can’t go to the hospital like this. I can’t go to surgery with the girls sobbing as my last memory. “Run down and bring up some presents” I said and the flames are doused. Instead of packing for the hospital, my bedroom is a sea of wrapping paper and Spice Girls posters and craft kits. I can do surgery now.

Hospital seemed endless. Recovery; an incredibly drawn process, was overwhelming. While it took months to garner a semblance of normalcy back to our lives, I surprised myself at my own strength. This heart, this incredible gift, was a “Cadillac” heart and was truly my second chance at life. Having lived the last four years of my life on the “plan only the day you are on” basis, I could truly look forward to tomorrows. I have met a wonderful sweet man, untouched by the jadedness of life. Now the four of us are a family. I still have to consciously make my muscles work and they don’t always listen. The biggest part of the struggle seems over for now and my hopes for better days come to the surface once again.

The beginning.

Make a big difference – in small ways!

pennyIf we think too hard about fundraising it can seem like an incredibly daunting task.  $500, $1000 – the amounts seem huge and hard to imagine raising, especially if we have never really fundraised before.  The reality is, with commitment, heart and a little effort small amounts become large VERY quickly!  I never fail to be amazed by the Walk for Muscular Dystrophy participants who bring in many pledge sheets filled line by line with $5 and $10 donations that add up to that single participant raising well over the hundreds and even thousand dollar marks.

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Many Benefits of Services Support

people on same levelMuscular Dystrophy Canada recognizes that it can be difficult to find the right information and services when dealing with rare conditions such as muscular dystrophy. Our dedicated services team is available to help you find your way. Muscular Dystrophy Canada provides support by assisting individuals to find the right information, programs, housing options and community-based services to meet their specific needs.

Following is a glimpse of how important it is to have the support and insight to navigate through complex systems.

A registered client of Muscular Dystrophy Canada move from the East Coast to Ontario in November 2011.  The client was fleeing an abusive relationship and came to Ontario in hopes of starting over.  However once she arrived she could not find suitable housing, support for equipment and services to get health care.  After numerous phone calls to many service agencies, the client contacted Muscular Dystrophy Canada to see if we could help.

Within 24 hours of our telephone call we were able to arrange for a home visit to meet with the client in her temporary lodging.  After meeting, and deciding what was needed, a plan was put in to action for the client.

Through our partner agencies and networks the client was able to visit a “new” family doctor within a week of the call.  We also assisted in getting OHIP, ODSP and temporary housing, until permanent housing became available.

Next step was to get assistance to have her “new” home assessed to ensure that assistive devices could be purchased to make her home safe, and allow her to be independent.  After a call to CCAC and a few home visits the house was ready to go, next came the walker she needed to navigate the community.  Again the assessments were completed and a new walker was ordered. Equipment was covered through ADP and Muscular Dystrophy Canada’s equipment program.

On December 1, 2012 the client moved in to her permanent home.  She was approved for a fully accessible one bedroom apartment in a clean, bright building.  She was ecstatic to have her own “safe” home.

Her hope of starting over in a new province and a new life became reality.  She stated during our recent conversation that when she arrived a year ago she never thought she would have an affordable accessible home, a family doctor, referral to a specialist, access to assessments in her home and help to obtain the assistive devices and equipment she needed.

If you or someone you know can benefit from our support Services please contact us.

Karen Dunbar is Service Specialist in Ontario and Nunavut region.

ATCO Electric raises $72,000 for Muscular Dystrophy Canada!

ATCO FundraiserATCO Electric chose Muscular Dystrophy Canada as the featured charity for its annual ATCO EPIC province-wide fundraising and awareness campaign between September 17-28th. ATCO Electric employees chose this year’s featured charity to be Muscular Dystrophy Canada because of stories of how muscular dystrophy has affected the lives of two long time employees and their families.

“Giving back to our communities is a hallmark of ATCO Electric employees,” says Bobbi Lambright, President, Operations, ATCO Electric.” Our employees live and work in their communities, so it’s important to understand the needs of the community and pledge to charities important to them.”

ATCO Fundraiser 2Every year, all nine ATCO companies participate in ATCO EPIC’s fundraising campaign that allows employees to easily pledge to the charities important to them in the communities where they live and work. Fundraising efforts include special events, auctions, friendly team competitions and employee pledges. ATCO pensioners are also invited to participate. All employee donations will be matched by ATCO Electric.

ATCO Fundraiser 3This year, due to the incredibly personal and emotional stories from two fathers affected by muscular dystrophy, employees across the province felt a strong connection to Muscular Dystrophy Canada, the primary reason why this campaign is the strongest ever, say organizers. This year’s campaign had the greatest number of employee and retiree pledge participation for the Feature Charity and the highest amount of money raised.

An astounding $72,000 was raised from special events.  Well done ATCO!  Thank you!

Terri Tumack is a Fundraising and Community Development Coordinator in Alberta.

Team Little Man Austin at the Halifax Walk for Muscular Dystrophy

Austin SweetOn April 1, 2011 we found out that our 4 year old son Austin had Duchene Muscular Dystrophy (DMD).  This is the day that we realized that our sweet little boy was in for a long road ahead full of many challenges.  This is the day that we will never forget; it is the day that our lives were changed forever.

DMD is a fatal genetic disorder that gradually weakens the body’s muscles.  There are different types of muscular dystrophy: Duchenne is both the most common and the most severe form of the disease, affecting 1 in every 3,500 boys. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys and it can occur in all races and cultures.  Although there isn’t a cure yet, there has been great progress and the question to finding the cure isn’t “if” but “when” the cure will be found.

Little Man Austin_Hfx WalkShortly after Austin’s diagnosis we found out about the Walk for Muscular Dystrophy in Halifax where we put in our team “Little Man Austin” to help fundraise for this amazing cause.  On the day of the Walk we met an amazing group of people and have been involved ever since.

Although we haven’t needed Muscular Dystrophy Canada directly yet for equipment, they have been a great help emotionally.  Muscular Dystrophy Canada also donates towards research for the cure.   It is great to know that they will be there when we need them for help down the road, whether that is next week, next month or in a few years.

Little Man Austin TVThis year, our family were the Halifax Walk for Muscular Dystrophy Ambassadors! It was great to lead the Walk (even in the rain) and talk to lots of people including Breakfast TV about this important cause.

We were able to involve lots of family and friends in our fundraising and were very happy to win the Top Team trophy raising $9226.00!

Let’s make a difference for our “Little Man” and others that are affected by muscular dystrophy and give generously to this great cause.

The Sweet Family

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