One of my closest and dearest friends has the sweetest child named Dylan.
I can't explain why, but Dylan and I have been magically connected since before he was born. Even though kids are OK in my books overall, since his birth, Dylan has managed to wriggle his sweet little soul right under my skin (in a good way), and to fill me with such a warm and cosmic glow. (Not to sound like a Scientologist or anything...) He's simply amazing, and even though I don't live in Calgary anymore and I don't get to see him very often at all, he still holds a very special place in my heart. Seriously... it's hard to resist his cuteness or his charm.
I've asked permission of Dylan's mom, Carolyn, to pass this note along:
It has been another year, and again I will be walking for the Stroll for Liver on June 8 to honor my son Dylan.
I actually dread writing this only because the reality of the facts depresses me and sometimes living in an alternate universe where I don’t need to think about this calms me.
As most of you know, Dylan was diagnosed with a rare liver disease called Biliary Atresia when he was only 2 months old. Our world as we knew it crashed. How could this happen? I remember when we were at the hospital for those 2 weeks that nothing else mattered except for the health of our little one. I honestly don’t remember if I took a shower, ate and sometimes who I even talked to. I just wanted someone to tell me and know for a fact that he would be ok….and no one could…not even the medical professionals. That is because this type of liver disease is full of unknowns. No one knows what causes the disease, or what to do to prevent it. They do know though that it is not hereditary or contagious and cannot be attributed to any aspect of prenatal care. However, you can’t help but blame yourself because you carried this little being in you for 9 months and took care of him when he was born. The worst unknown is that there is no cure…YET!
Biliary Atresia is a chronic, progressive disease. Even with a successful Kasai (the major surgery he had when he was 2 months old to help with bile flow), 50% of patients will end up needing a liver transplant before the age of 5 and 80% before the age of 20. It is the number one cause of pediatric liver transplant. We pray everyday and hope that Dylan’s liver can hold out for a long time, and although we are extremely grateful that Dylan is doing well currently, one day his liver may lose this fight. We don’t know when this day will be, the doctors can’t even give us an estimate…it is a day-by-day thing and TODAY Dylan is doing wonderful. I watch him everyday amazed that he shines and teaches me about life. Sure I get depressed at times when I think of the stats but I can’t let that ruin the positive energy I try to give Dylan. My world is Dylan. I think I may even be a little obsessed with him…just a bit. And nothing hurts me more than to feel helpless.
That is why I am trying my best to get off my bum right now and do something about it. Without the money that goes to this foundation, no or limited research can be done to find a cure. To give you a little insight, cancer and heart disease currently receive 10 to 15 times more money each year for research. What hope does this give us that a cure will be found for liver disease? I remember that last year’s stroll for liver, our team ended up being the top in CANADA and we raised $13,000. OUR team from Calgary…TOP! And the total amount raised in all of Canada didn’t even reach their goal….not even half. What does that mean? Well first it means that there were a lot of generous people that support Dylan and his cause and love him, and second that means not enough is being done elsewhere to fund for this research. I cannot be ignorant to this fact…I still have very strong faith that a cure will be found in our life time….I have to.
The last thing I want to mention which really disturbs me is that even though transplant could be in the future ( I always say “could” instead of “would”, even though the doctors say “It is not if he will need a transplant, it is when”), it is not a cure....the 15 year life expectancy after transplant is 48%. Of course the thought of this makes our world crumble piece by piece.
Well there it is…the dreaded facts that I hate mentioning, but I thought it is important because most often if you see or talk to me, I will not tell you that, because it always brings me to tears, and at the same time I feel the need to remain positive and not think about that and be grateful for this day.
I can’t stress how important this is to us. The Canadian Liver Foundation is our hope for a cure. Nothing can be done without your help. Please support us on this walk by making a donation. If you would like to join us on this walk and help raise funds, you can join our team called “Dylan’s Dinosaurs” . This year our team goal is to beat last year’s goal of $13,000.
This disease is serious. The Liver Foundation not getting nearly enough money to fund for research is also serious. I cannot sit back and wait for a cure to magically appear. I will walk on that day. I will do anything for my baby…cuz he is my baby and I want him to live the life that we all enjoy.
You can help support me by making a secure online donation using your credit card. Click on the link below:
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Thank you for your support and hope to see you there!
Now, I know most of you do not know Dylan or Carolyn personally. Some of you do not even know me personally (for shame!), but I'm hopeful that the spirit of giving and helping out is not limited to our own individual circles of friends.
Giving to charity is a very personal decision, of course, but if everybody who reads this blog found it in themselves to donate even a little bit, we could help raise at least 15 bucks (right? mom? dad?!! the one other reader who visits this blog??) KIDDING!! I'm sure we could do way better than that!
It's up to each of you in the end, dear readers, to help out in the way that makes you feel comfortable. I won't love you any less no matter what you decide, but maybe I'll love you just a little bit more if you help Carolyn meet and beat this year's goal... (Again kidding. Kind of.)