C is for Carson and the Cannels

Today I will try to run, hopefully the week off will be enough to have let my bursitis settle down. Wish me luck, say a prayer.

My motivation is this cute little guy, his name is Carson. He is currently living in an orphanage in Europe. He was separated from his brother (who also has EB) 2 years ago when his brother became too old for an orphanage and was moved to an institution.



These are the Cannels.



They would like to adopt these brothers and bring them to the United States so they can once again live as brothers. All of the paper work is done. The family is just waiting for their travel dates to be able to go pick their boys. While they are waiting they are working their tails off to try to raise the funds needed to bring them home. They need to raise $35000! It sounds like so much, but can you really put a price on what it would mean to have a family and have someone do the wound care that your body so desperately needs?

Asking for sponsors to run this marathon has been hard, I am humbled by the people who have donated so far. But this is the way I see it, I want EB to go away so badly, but I want these boys to have a home and a family like my Zack even more! So if you have $5 dollars or more, please think of making donation to help bring them home.

You can donate HERE or HERE

Spend your lunch money on the boys, and then come to my house and I will make you Dino shaped chicken nuggets, the ones from Costco, that are so yummy. And then you can have as many popsicles as you would like. We have a freezer full, the weather has yet to get warm enough to have too many popsicle days.

Bruce, bursitis, biking

Bursitis really? So once again I am joining the ranks of 80 year old women, I have bursitis again. This time it is in my right hip instead of my left. I guess my body was not ready to make the jump to running 4 days a week. I was able to work through it on the right side with physical therapy and still run the half marathon. But this time it feels different.

This time I am not only trying to get into physical therapy ASAP, but I am going to go to an acupuncturist. I want it healed quick!

Until then I am stuck on a bike or swimming for training which makes me really really sad.

I am also wondering if maybe you could keep me in your prayers. My sweet kids reminded me last night as I was talking that Heavenly Father could heal my hip and that he would not use needles like the acupuncturist. I would prefer no needles.

So today I dragged out my bike and kid trailer and baby sis and I hit the road for 5 miles.

Today I biked for Bruce, and because it was my first bike ride of the year, I will be sitting for Bruce for the next week. Bruce is a legend in the EB community. Bruce will be turning 45 this year! Let me say that again because it is huge, he has the same form of EB as Zack and he will be turning 45 this year! Bruce is an inspiration to say the least. I have seen him ride a bike, ride a horse, climb a rock wall AND do the "bump" on a dance floor. He lives on his own and does his own wound care.

Bruce is one heck of a fighter. He has fought round after round of Squamous cell carcinoma, a very aggressive form of cancer that people with RDEB get. He lost his mother last year, he is one of the few EB patients that I have ever heard of to out live a parent. He is affectionately known as "Grandpa Bruce" to many because it is nothing short of a miracle that he is still going strong.

Thank you Bruce for setting the bar high, for giving me hope and for leading the way for younger EB patients.

Happy birthday Angel Bella

Next week Bella's family will be celebrating what would have been her 2nd birthday. She went to heaven last October. Bella had The opportunity to participate in a ground breaking new procedure. She received a Bone Marrow Transplant, the transplant improved her skin, but the rigors of chemo therapy in order to get the transplant took too much of a toll on her body.

Her dad Tim, has blogged consistently about Bella since her birth. He has always had a great way of summing things up. He is a man of great faith. He has put my thoughts into words many times. I just wanted to share a few of those summations.

So many people ask us why we have not done a BMT for Zack yet, for us, and for Zack it is not the right time. This is how Tim describes in a nut shell the success and failures of the BMT

"So far, the results - meaning that stem cells are leaving the blood supply and turning themselves into skin cells for the first time in medical history - are worthy enough for publication in the New England Journal. The spectrum of success is as broad as it could possibly be... from amazing success with several patients now, to tragic failure with several patients, to side effects as bad as EB, to graft failure. This treatment in its current form is a part of a process. It was never meant to be a cure or the end. It has always been merely a stepping stone."

I think any parent just wants to do the very best they can for their kids, when you throw special needs with so many unknowns into the mix, it is so easy to second guess every choice you make on their behalf. Tim's words have brought me a lot of comfort when I have waves of "am I doing my best thoughts" He said this a short time after Bella's passing.

"When we got home last night, I realized that we didn't let her down. We can say in full integrity that we couldn't have done better for Bella, and at the end of the day, regardless of how old or successful your kids ever live to be, that's what you want to go to bed feeling in your heart. Ultimately, they are on their own journeys, and you cannot control their outcome, but you can give your best, and if you do that, you can fall asleep knowing you did your part."

He said this about being brave enough to admit you have faith.

"One more thing about faith I want to share tonight. I was really nervous that if Bella died, God would have made us all look the fool for praying sooooo hard for something that never came to pass. I thought, "Tim, you are really going 'all in' on this faith thing that Bella's gonna pull through. What if she doesn't? How are you going to explain that to your blog readers, huh?"

Good question, especially because Bella in fact did not get better, she died.

Well, if by praying and turning the intense fear and anxiety in me over to God, I am freed up to be connected, present, and in action for myself and my family, isn't that better for all of us regardless of the outcome?

I know God is ultimately in charge of the outcome of all things, but I also know that I have a say in the process of all things, so I can choose WHO TO BE in the face of ALL THINGS."

I have learned so much from Tim, who continues to fundraise to end EB. I am looking forward to running 6 miles in the morning with Angel Bella and thoughts of how I want to be like TIm.

3 for baby sis

Brently joined our family when she was almost 3. She does not have EB, but she is the best sister or friend anyone with EB could ever want. The other day at Walmart (where we usually get our most classy inquiries) a lady kept expressing her shock at our gauze covered child. I don't think she was sober so we ignored her. 36 pound Brently turned around stared her down and in a very big voice said "he has EB and lots of it! hhhhmmm" flipped her hair, turned around and asked if we could go to the Barbie isle.

Last summer when our family went to Ohio to meet with other EB families she ran around exclaiming "look there is EB like our Zackers!" To her, all of these EBers were celebrities. She is getting pretty excited for our trip to skin camp in a month, she has a secret crush on a another little guy named Zach, she likes to call him the "nother EB Zackie". Our neighbor over heard her wanting to play "doctor" with her son, she listened with concern until she heard that Brently used correct medical terms for wound care.

Zack is very much the protecter of his baby sis, friends are not allowed to pick on or tease his sister. He might occasionally, but friends are not allowed to. Heck, I even get in trouble if I get after her for anything. This is her birthday week and today she had her 5 year old check up. Zack was worried about her getting her shots. Later he wanted to know on a scale of 1-10 how bad the shots hurt her. He was relieved to find out that because of a mix up with our insurance she did not get them.

These 2 kids are lucky to have each other. They make a pretty great team. There are days when I feel like there are 3 moms in the family because they both tend to think that for various reasons they are the momma too.

I have no idea what the future holds for this feisty 5 year old, but I know that the EB community is blessed to have her part of it.


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5 for the B's

I wasn't going to post for shorter runs but today I am needing a little extra push. Our crazy weather has my sinuses and allergies so confused that they decided to give me vertigo! I am so dizzy but thinking about these tough kids and what they go through everyday will help me get in my 5 miles.


This little cutie is 4 year old Brian from Florida. I love that he has regular band-aids on top of his wraps. I remember Zack being in love with regular band-aids and being so sad that he could not use them. He too loved having Mr. Incredible band-aids put on top of his wraps.


This little princess is Bianca. We have known her since she was 18 months old, she is just a few weeks younger than Zack. We see her family every 2 years and it has been so fun to see her grow up. She is an honor roll student and I have a feeling she is going to give her parents a run for their money as she grows up!

AJ and Barbara and adoption

I am already rethinking the alphabet thing, I forgot one of my favorite little guys on A day. Every 2 years the national EB organization hosts a patient care conference, (PCC) in 2008 it was held in Denver. That is were we had the pleasure of meeting Barbara and her sweet adopted infant AJ. The PCC's are where we get to meet most of the EB families. AJ has a smile that is like nothing I have ever seen before, it is the best smile on the planet! I honestly remember being jealous of the fact that I did not get to take this little guy home to be mine! If I was in the business of kidnapping AJ would be first on my list, I just instantly fell in love with that little guy. I think I probably would have kidnapped Barbara too! She is such a great example of faith to me. She has many children through adoption, foster care and even biologically. She is calm and comforting, she is everything I want to be when I grow up. She has a great faith based blog, that I love to stalk, I love that she puts so much perspective on dealing with children who have special needs and how they are viewed by Jesus.

I also wanted to add that Amber who I ran for Friday was also adopted. Amber and AJ are not the only EB kids who like my Zack, were adopted. We know MANY that have been adopted, off the top of my head I can think of 12 children with EB that were adopted. I heard someone say something to the effect that people who adopt children with special needs are a "special kind of crazy". Do I believe it? Maybe. But if I had to be labeled into a group I guess I would be glad to be a "special kind of crazy" with the other families who fall in to that category. Sadly we know a few EB kids who have yet to find a forever family. Even sadder to me is that we know of 2 families who are fundraising like crazy to be able to adopt children with EB but the process is so slow. The Cannell family is committed to adopt 2 boys with EB from Europe. And the Delgado family doing their best to raise money to bring this little EB sweetie home.

Friday runs

Friday runs are my long runs. They will range from 6-20 miles, the 6 miler is in the bag, the 20 miler, I am not so sure about. Yesterdays run was 9 miles, it was my first run when sun was actually out and shining. I am going to have to start going earlier because 70 degrees felt like 100 degrees on mile 8. The cool thing is the butterflies were out in full force. Orange and white butterflies were all over an old farm that I ran by.

I have decided that on friday runs I am going to think about an EB friend or an Angel or 2 or 3 to help me stay motivated. Since I have enough weeks, I think I will just work my way through the alphabet. Today I thought about Amber, she was 11 and as her mom put it "Amber's life has finally begun! She went to be with Jesus last night and she will never hurt again!" She had RDEB like Zack, she passed away May 9th. I only briefly met Amber in Ohio last summer, her red hair was beautiful. What impressed me about Amber was her style, she had a service dog that was a big black poodle. If you are going to have a service dog and want to be fancy, a poodle is the way to go! She trained the the service dog herself. I was also thinking about my Sister in law Alisa who is and angel too. She would have had a birthday last Saturday. She loved Zack, she was the reason he was on TV for the first time.

To my EB families, I would love for you to send me the names of your butterflies or angels, I don't want to forget anyone!