Tuesday, August 24, 2010



Deborah Joy Takes on the Kidney March

(September 10-12)








The following is from the KidneyMarch website:

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Why March? Why Now?


A crisis is looming

Two million Canadians have chronic kidney disease or are at risk. Most people don't know that they are at risk. Most don't know they have it until it's too late. The numbers are growing at an alarming rate. In southern Alberta alone, the number of people living with chronic kidney failure has doubled in the last ten years. 70% of people who are on the organ donor waiting list are waiting for a kidney.

There is no cure.

Kidney disease is irreversible, and each year it kills thousands of Canadians. These numbers are growing. Kidney disease cases are expected to double in the next ten years. Unless we as concerned citizens stand up and take action, this silent disease will continue to take lives and livelihoods.

Not only does kidney disease cost enormous amounts of money for our health care system, it devastates individuals and their families. More than half of the people living with kidney disease in southern Alberta live on or below the poverty line. Entire families are impacted when one member has kidney disease, and it's a life-long illness.

We are asking you to do the most you can possibly do – walk the furthest you've ever walked, raise the most money you've ever raised, and commit to truly making a difference. Walking 100 kilometres over 3 days is an intimidating feat; after all, we're all just normal, everyday people. But, we believe the only time we can be brave is when we're afraid. And we're ready to be brave for this cause.


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They say it's not the "beautiful" kid disease - as if any disease can be beautiful. However, we all have seen pictures of little children, pale and bald and with intense eyes looking out at us, and our hearts are wrenched and we whip out our credit cards.

But who wants to make posters of children with bags under their eyes and puffy little bodies, sometimes enshrouded in a terrible odour because of the drugs they are forced to take? Kids who have to do hospital school because they spend so much time in the kidney ward. Kids who have to miss their siblings' birthday parties. Kids scarred from multiple surgeries that began before they could even consciously remember. And now that they do know, kids who are terribly, terribly conscious of these scars as they grow older. Kids who have never experienced one pain-free week.

Kids who have known no other way of life.

Deborah thinks these children are beautiful. She has seen many of them from when they were mere weeks old, and she cares for them until they "age out" at 18 years old. She knows them as well as their parents do -- in some instances, where teenage subterfuge has been employed, she knows them better than their own parents do ...

There is "Baba", one special little patient. This Indian term of endearment, pronounced "Bah-buh", is what Debbie called "her" beautiful little boy from before he knew who she was, who he was. Baba grew old enough to be able to receive a kidney transplant and his Mommy proved a perfect match. In the months leading up to the surgery, he and his brother and their Mom would visit Debbie often in the clinic. One day, Debs told us, a powerful little 3-year-old voice came booming down the hall: "Baba, I NEEEEEEED you!" 

And there are the twins, beautiful little girls under a year old from Kenya. Their mother had received no prenatal care and both girls were born with damaged kidneys. But their parents have faith - faith in God, faith in the kidney department, faith in the doctors, faith in Deb.

I have been present when Debbie has brought kids and their families out of hospital on Christmas day to her home so that they could have a normal Christmas under her watchful, loving eye - the doctors signed the release, saying, "If they're with Debs, they can go." I have been staying at her home when she gets a 2 a.m. phonecall from a panicked parent who can't cope with dialysis. I have seen her go above and beyond the call of her "job", clocking endless extra hours to help out someone who might have a chance. And I have also watched her grieve with families who have lost kids to this tragic disease. She is invited to sit with the families at funerals and she mourns as though it were one of her own children she is burying.

My sister Debs has pledged to walk this 100 km walk with her team, KIDneyKIDs. Deborah is a nurse at Alberta Children's Hospital, in the nephrology department, and she and some of her colleagues and some of the kidney doctors have all signed up. This is something she, and many of her team, has never done before. But she cares so much that she is willing to get on the road, continuously dislocating kneecap and all, to raise support and awareness for this awful disease.

You can check out her page at the link below.


http://fundraising.kidney.ca/c.tvI5IeNSJsE/b.5767647/k.9420/SponsorSearch_for_a_Marcher/siteapps/personalpage/ShowPage.aspx?c=tvI5IeNSJsE&b=5767647&sid=fpISKVMxFgILLYMALnH

In these days of marches for this and rides for that and runs for the other thing, it is hard to know which cause to support. And in these austere economic times, it is important to be sure that hard-earned money is going to a worthy cause.

When you look at Deb's donor list, you know. I was looking at it this morning, and there are parents and families listed who have had a beloved child in the Alberta Children's Hospital nephrology department. There are people who work with Deb, who pray with Deb, people who go on the KIDney picnics, people who have received one of the kidney-shaped cushions she has sewn for them on weekends to clutch onto for comfort and relief after surgery.

Debbie has managed to reach her minimum goal; but not only does each person have a personal goal, they also have a team goal. And Deb's team is composed of nurses and doctors who are expert at what they do, but who are hopeless fundraisers. Let's just say this: Dr. Julian is one of the best pediatric nephrology doctors in the land, involved with cutting-edge research and treatment.  Dr. Julian was instrumental 15 years ago in caring for Matt, my own nephew. Dr. Julian has committed to walking the weekend of September 10 - 12. But oh dear, Dr. Julian - never quit your day job!

If you have the wherewithal to sponsor Deb - even $20 is an encouragement and will get you a tax receipt - please consider signing up to sponsor her. Her link, again, is

http://fundraising.kidney.ca/c.tvI5IeNSJsE/b.5767647/k.9420/SponsorSearch_for_a_Marcher/siteapps/personalpage/ShowPage.aspx?c=tvI5IeNSJsE&b=5767647&sid=fpISKVMxFgILLYMALnH

Deborah Joy, I am so proud of you! You are a wonderful sister, a tremendous nurse, a compassionate human being.

May your glomerular filtration rate always remain strong!

2 comments:

  1. Dearest Karyn,
    Thank you for being so kind. You are an incredible support, cheerleader, and as it turns out, advocate for both me and these families! I am truly blessed to work alongside them and our team. It is they who are the champions! We trust that the walk will raise awareness of this lifelong disease, provide moral and physical support for those who fight it each day and aid in the search to prevent its' onset and progression. Our desire is to see our 'babas' have full and healthy lives!
    Thank you again,
    Deborah

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  2. Deborah is my hero! I love her, and admire her every step. Well done, baby sister with the biggest heart and strongest spirit! Walk on through the wind. Walk on through the rain. Hopefully through lots of sunshine on Saturday too! You'll never walk alone. And kids who otherwise couldn't walk will rise up and call you blessed.

    ReplyDelete

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