Do you ever think about losing your child?

For the last few months, Julie and I have been following the story of Eva Markvoort. Eva has been a courageous and energetic CF patient with an infectious sense of hope. We’ve clung to the hope that Eva would succeed against the odds and triumph over the same disease that our daughter Katie has.

The last few weeks have been tough to watch as Eva’s health deteriorated. The finality of her death this past weekend was a reminder to us that our daughter suffers from a disease with no known cure and a cruelly short life span (less than 40 years of age) for over 50% of CF patients.

Seeing someone die from this disease at the age of 25, when that person should be living life, growing a career, getting married, having children, seems horrific to any parent. For many, the thought of a parent burying a child is unthought of. It’s supposed to be the other way around. Parent’s aren’t supposed to outlive their children.

For those parents that do lose a child, it can be sudden, catastrophic and devastating. Car crashes, accidents, violence and suicide can come from nowhere and cripple an entire family with grief. There is no time to prepare. No time to say goodbye. No time to think of what if.

But for us, we understand the freight train that is heading towards us. We know what cystic fibrosis does to the body. We know that it relentlessly eats away at healthy lung tissue, leaving scarred and damaged lungs that can’t process oxygen. They starve the cf patient of air, leaving them unable to breathe.

CF patients deal with daily treatments to help fight off the effects of disease. Julie and I work daily on Katie’s body, doing our best to keep her healthy and to keep infection at bay. We fear for the future. But, we’ve learned that we have to live in denial about what the future holds. We deny that CF will get the best of Katie. We hope that she’s one of the lucky ones – the ones that surpass the average life expectancy. We hope. We pray. We push that fear to the far corners of our minds.

Eva’s situation has reminded us of the gravity of the situation that we face with Katie. Odds are that we will outlive her. Unless something changes. And that something needs to happen sooner rather than later. We can’t wait until Katie is horribly sick with disease to start fighting for a cure. We need to act now, while she has her youth and her health and her vibrant, bubbly nature.

We need to do the heavy lifting now to help find a cure BEFORE Katie needs it so that it is available, tested, proven and reliable when she needs it.

Research looks promising. But I don’t see a cure yet. And I don’t want to wait until Katie desperately needs a cure before we start looking. I’m fighting now to help find a cure so that when Katie needs it, it’ll be there.

Put yourself in our shoes… What would you do if you knew that something was going to prematurely take the life of your child? Would you wait until that time came to start fighting? Or would you work now to prevent ht from happening at all?

Please do help… every little bit helps. Consider some numbers:
According to facebook, the average user has 130 friends. Imagine if each of those friends donated just $10 to a cause. That’s $1300! And imagine if each of those people asked their friends to donate – and their friends donated that same $10, that would total $169,000! It’s crazy what a simple $10 donation could do. And yes, it’s unlikely that those 130 friends would not overlap. But, that’s not really the point. The point is the power of social networks and small donations to help effect change.

So think about it… help us out. Ask your friends to help us out. It’s easy to do. Donate here:
Click here to donate to Team Katie
Click here to register to walk with Team Katie on May 29 at Safari Niagara in Stevensville.

Help us make CF mean “Cure Found”.

Todd, Julie, Noah and Katie

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Tribute to Eva Markvoort

As many in the CF community know, we lost a great CF champion this past week. Eva Markvoort died this past weekend of CF-related complications at the age of 25. Eva has been a courageous and uplifting CF patient who demonstrated hope and love in the way that she strove to raise awareness of Cystic Fibrosis in hopes of finding a cure and to help raise awareness and support for organ donation.

Eva was the subject of the documentary 65_RedRoses, which is an award-winning documentary. This documentary has been featured at HotDocs in Toronto and the Vancouver Film Festival. The documentary has been broadcast on CBC as well. This documentary will be broadcast again this Friday April 2 at 4am and 8pm. For more details, see this site: http://www.65redroses.com/

The documentary chronicles Eva’s deteriorating health condition from Cystic Fibrosis and her wait for a new set of lungs. The documentary highlights the difficulties of cystic fibrosis, the challenges of organ transplant and the hope for new life that comes when organs become available – donations made available by the loss of another’s life. The documentary ends on a positive note, showing Eva participating in a Dragon Boat race, seeing life in front of her that had not been possible before her double lung transplant.

Two years after her transplant, which occurred in late 2007, Eva’s health began to deteriorate again. This time, her body was rejecting the new lungs that had prolonged her life. Eva held on, blogging about her deteriorating health, her thoughts, her fears, her loves and her dreams.

This past Saturday March 27, at 9:30am, Eva died. This short post announced it to those that were following her struggles on her blog, 65redroses.livejournal.com:
“Our beautiful girl died this morning at 9:30. She is at peace. Will write more later.”

Eva’s legacy will be a strong one. Eva has been a lightning rod of activism and awareness for a disease that science has made great strides against in the last 40 years. There is still much to do to beat this disease, but Eva, I thank you for all that you have done to combat this disease and to provide hope to the many that still suffer from this terrible disease.

To honour Eva’s life, please consider making a difference:

  1. Sign your organ donor card.
  2. Share Eva’s story – 65_redroses trailer
  3. Celebrate Eva’s life: Join the facebook group

Thank you Eva. You are greatly missed.

Todd

Breathe by Matt Scales – song lyrics

Our Team Katie video for 2010 features the song Breathe, from Matt Scales, a CF patient who died from the disease in 2007 at 28 years of age.

Matt’s personal struggle with CF made the song especially poignant, given his intimacy with the disease.

You can view more information about Matt and you can also download an mp3 copy of the song as well as an mp4 video of the song at this URL: http://www.cfvoice.com/info/breathe/index.jsp

Here are the lyrics to the song, Breathe:

Breathe
By Matt Scales
Through my eyes
I see you
Staring at me
All the time.
So I wish
That it would leave
My body.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
So won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
Then I think that
I’m all right
But it keeps changin’
Like the weather.
It’s not up to me
How I feel
How I feel
Inside.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me…please?
Cause one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you…like you.

Original “Breathe” Composition © 2001 Matt Scales and Barnaby Pinny.