Sunday, May 27, 2012

May 27, 2012: Happy Birthday, Bella!


Dear Bella,

Happy Birthday, sweetie!  Today, you turn 3.  Today at church, we celebrated Memorial Day.  Gosh, it was such a confusing, time.  There we were, in our awesome I REFUSE Epidermolysis Bullosa t-shirts, handing out the amazing cards, both made by Christie Zink, telling your story to friends and new acquaintances.  One wonderful church member walked up to me with a donation check!  She didn't know it was your birthday.  She saw my other t-shirt a few weeks ago... the one with your big happy picture splashed across the front of it... and got inspired and read our blog.  That was really neat.

Tomorrow is Memorial Day, where we remember those who have laid down their life for our freedom.  It is a very special day.  Every Sunday, we remember Jesus, who laid down his life for our spiritual freedom.  Today, we remember you, who laid down your life for all other EB kids after you.  Words of remembrance and sacrifice and love were brought up today repeatedly, and I couldn't help but think about you the whole time.  I felt like I was attending your memorial service in a way.  It makes sense; at the memorials we held for you, your mommy and I essentially hosted and ran them, and so we really didn't have 'the space' to break down and mourn your loss.  Well, today, sitting in that pew, wearing black, I felt like I finally had a chance to attend your memorial.  I cried.  A lot.  Our friends reached over and held us. We had a guest violinist play two amazing pieces with our music director accompanying on the piano.  They were also called Remembrance, and Sacrifice (from Schindler's List).  The music was so pretty.  I let the different speakers' words, and the wonderful music wash over me, and minister to me.

How are you?

I wonder what you'd be like at 3.  Funny, energetic, full of life.  Would your EB have progressed yet?  Would you ever have learned to walk?  I have a hard time visualizing you... do I imagine you at 3 post BMT or as if it never happened?  I'm confused.  I also have a hard time visualizing you at 3 because it feels like you were never supposed to be 3 this lifetime around.  It just feels like you came, did your job, fulfilled your purpose, and headed back home.  I know you understand what I mean.  It's as if you are so much older and wiser.

I think the worst part is that you have been gone officially longer than you were here, and that time will continue to rip me further and further away from the moments where you were alive, not just laying in a hospital bed sedated.  My memories of you that are not videos and photos are fading away.  Oh, how I hate that.  It's such an awful feeling, I mostly try to ignore it.  I feel like a bad father, and a bad daddy.

I apologize.

I know that you can see what we are up to down here, and I hope that the butterfly garden Ali and mommy made for you yesterday made you smile.  It sure made me smile when I saw it this morning.  Ali loves you so much; I'm so proud of how well she still holds so much of you in her life and in her heart.  She shared about her t-shirt in her children's worship and wonder class this morning, and when the other kids found out she was walking to raise money for a cure for EB next month, they all pledged to help her by bringing in some of their allowance money next weekend.  It was adorable hearing that these little ones are learning the value of stewardship in a real, meaningful way at such a young age.

Tomorrow, I'm playing the Star Spangled Banner on guitar, along with a soloist and a vocal quartet for a Memorial Day service here.  It's the first time I've played that piece on guitar, and it's the first time I think I've participated in a Memorial Day service.  I am humbled, and nervous.  I hope we do the day and the service the justice it deserves.  If you're not busy, will you come hang out and make me and my fingers calm and precise?  That would be great!

Anyhow, life is good here.  We are blessed with good friends, family, and a faith community that is just beyond wonderful.  We had a wonderful BBQ lunch with two other church families today, and it helped us tremendously to be with friends on such an emotionally intense day.  There was a ton of laughter, music, great food, and sweet tenderness.

I miss you, honey, but I'm glad you are in heaven.  There's a lot of work for us to still do down here, but we're making amazing progress in treatment and fundraising so every kid that's come along since you with EB genuinely has a better shot than you did.  You laid down your life for others, so the docs could learn than busulfan can't be used in kids with EB.  What a difference that knowledge is making.  You did your part as a soldier in the war on EB, and we honor your life and service on this your birthday by saying that we are making good on our promise that the doctors have the resources they need to keep this research going so that one day, there are various treatments for EB, and nobody has to die from it again.

With this challenge grant, if we can reach the full amount of $450,000, that will double to $900,000 in research funding.  If you add that to the the roughly $200,000+ they've received in the past year and a half, that will take us over the $1.1 million mark, which will be $50,000 more than Dr. Tolar first asked for when we asked him what he needed after you died.  I feel like if we can hit that mark, we will have made good on our promise.  I know that I will feel complete, and won't need to 'fight EB' on your behalf anymore.  Help me stay the course the rest of this calendar year, since the challenge grant goes away on Jan. 1, 2013.  I've been really struggling lately as you know, and I need my best self in gear in order to accomplish this goal.  Thanks for being by my side no matter what the outcome, for I know all we can really do is our best, and leave the results up to God.

I love you sweetie.  Thank you for choosing us to be your parents.  Happy Birthday, you may be gone, but you are not forgotten.

God night.

Sunday, May 20, 2012

May 20, 2012: 40 Days and 40 Nights...


... Till Time To Fly!

Holy COW time is FLYING.  I can't believe next weekend is Memorial Day Weekend again already.  Where does the time go?  Before I go any further, BIG SHOUTOUT of congratulations goes out to Patrice & Matt Williams for a successful "Jogging For Jonah" race!  It sounds like it was loads of fun for all who attended... and that was A LOT of peeps!  Great work!

I ran a 5k loop in my neighborhood yesterday, and I was a full 3 minutes off my Speedy-Gonzales pace last year, but it's a bit hillier here, so it's good training!  I'm traveling out of town the next 2 weekends so that only leaves me with 3 more Sat. morning runs before the race!  That's not much.  I want to break my time from last year... well actually what I really wanna do is win my age group (30-39).  I will be 39 and 10 months on race day... probably the oldest guy in my bracket... and I think it would be cool to be the old guy, and win!  That's gonna take a lot more work on this end, though.  I tend to make super-human predictions (more on that another time) regarding my ability, so I don't know if I can really do it.  After all,  who even knows who's gonna show up at that race on that day?  Leave it up to God, Tim, leave it up to God.

IF you are planning on joining our team, you need to join by May 30 if you want a FREE snazzy Team PUCK jersey!  They are really cool... I'll post a pic next week of one.  We've noticed that it's challenging to get people to register online this far in advance.  You get to have your very own fundraising page that you can add a photo to and customize the text to match your personality!  Registering early gives you enough time to reach out to your friends and family over email and social media the 5-6 times it takes in order for people to actually go make a donation.

Case in point... our church is conducting an online survey right now, and we have heard the associate pastor share how computers are set up outside after church if anyone needs help with the technology... meanwhile, it's been like three weeks, and Ang and I STILL haven't gone online to fill out the survey!  Tonight, we at least TALKED about the survey, and brought home the website address... and who knows, after a couple of weeks and several conversations, maybe we'll get to it after all tonight!  LOL.

In other exciting news, Ali lost one of her two front upper teeth this week!  She has been complaining about it for what seems like forever, and the other day (Thursday,  I think), she came running up to me with that big, Gap-toothed grin, and it was just about the cutest thing ever.  She is so much fun.  Sometimes dramatic, but overall such a great kid.

Yesterday, we hung out with non other than Bella's boyfriend, Daylon Edling and his family!  They live about an hour from us, and another set of friends moved out near them, so we decided pretty far in advance to take a Saturday and visit them both... and I'm a dumbass because Jennifer was taking pictures with her much-nice-than-mine camera and amazing skills, so I have no cute pictures to show you!  DRAT!

BUT... I can tell you this...

There was not a single bandage of any kind on his body... anywhere.

That's not to say that he didn't have little owies here and there... he did... but it was still simply amazing.  This is a boy with Junctional Herlitz EB who will turn 3 in July, and was just sitting in a pair of shorts, a panama shirt, and a cap... just hangin' out... BAREFOOT!  The journey he has been on is nothing short of amazing, inspiring, and completely miraculous.... and he has 4 siblings to boot!  Bless Jen and Bryan's hearts, they are just amazing to be around.  SO MUCH FUN, despite all they've been through and still go through.  Jen, Bryan, and Daylon, you are TRULY an inspiration.

Okay, I'm falling asleep here and there are LOTs of dishes to clean.  Thanks for being here with us.

God night.

Sunday, May 13, 2012

May 13, 2012: Happy Mother's Day!


Happy Mother's Day to all you moms out there!  Your contribution to the world is immeasurable and underestimated.  Your ability is beyond the capacity of us dads and we are grateful to be paired with such powerful, graceful, nurturing partners.

We began our festivities when my mom was in town two weeks ago with a sunset boat trip through Newport harbor with wine, fruit, cheese, fellowship with friends, family, and jazz.  Last night and tonight, Ang got to pick whatever restaurants she wanted to eat at, including dessert.  This morning, we went to church, followed by brunch at her brother's house where he cooked an amazing meal for us all.  We then went shopping and scored a few deals for the kids and our selves while down in Huntington Beach.  Now, it's 10pm and the kids are very reluctantly going down at last.  Tomorrow morning will be rough, but it was a great mother's day weekend here.

Friday night was Ali's school carnival, and being rookies, we agreed to volunteer to help.  I was on hamster ball duty from 5-6 and Ang was on prize booth from 6-7, and somehow we were supposed to hand off the kids in between.  Well, at 6:20, my replacement still hadn't shown up, so Ang was stuck with Julian and couldn't help at the booth.  Finally I told the pres. of the PTA who was in charge that I had to split so I could take over on baby detail, and at 7:50, when no one had shown to replace Ang, and Julian was screaming for dinner, Ang finally had to just walk out of the booth.  Moral of the story, don't volunteer at the carnival when you have a baby in tow!  LOL.  Won't be doing THAT again!  Ali had a blast, though.  She made a cake with mommy and daddy for the cake contest and cake walk (see below), won a goldfish (which was awesome because her betta died THAT morning!), ate funnel cake for the first time (then woke me at 2am for TUMS), and played with her friends, so it's all good.

In other news, thanks to those of you that have written about considering coming to Time to Fly!  P-L-E-A-S-E register on the website and join our team!  Just click the big button on the right, and then when you get to our team page, click on JOIN TEAM PUCK and follow the instructions.  The main thrust of this walk is for children's cancer, but we want to have a small army of Team PUCK in our super cool custom t-shirts handing out business cards with QR codes to our website, advertising our text-to-donate campaign on our shirts, and raising as much EB awareness as possible that day.  However, the purpose of the event is to raise money for research, so the sooner people register, the sooner you get your very own customizable page (here's mine, for example) where you can send people on facebook or email to with a short little post and a link!

This is probably going to be the only fundraising event we do in MN this year (planning a luncheon in WI in the fall), so please, if you are local, will you join us?  It's an amazing combination where we as PUCK have no overhead to produce this event, AND every dollar raised will be matched by the EBMRF/JGSF Challenge Grant... no overhead and twice the proceeds!  That's a pretty cool (and rare) opportunity.

Lastly, big congratulations to Patrice Williams and her friends and family that helped put on "Jogging For Jonah" yesterday!  I haven't heard the details yet, but Patrice and co. worked HARD on making it a great event and I'm sure it was!

Lastly lastly, today is also Tripp's 3rd birthday, and I know it's a rough and tough Mother's Day for our dear friend Courtney Roth.  Please keep her in your thoughts and prayers tonight/today/whenever you read this.  When we walk through our grief together, we divide our pain and multiply our joy, when it finally returns.  I know you continue to walk with her as you did with me, and I thank you so deeply for that, because I know what a difference it is making with her, just like it did with us.

Bless you all.

God night.

Sunday, May 6, 2012

May 6, 2012: The Challenge Grant is On!


Long post... head's up!

You may recall a while back where I spoke too soon about something, then retracted it with apologies to all involved?  Well, the wait is over... I can finally tell you about this amazing opportunity for EB research.  I am going to share with you VERBATIM the key points shared with me:

·      The Epidermolysis Bullosa Medical Research Foundation (EBMRF) and the Jackson Gabriel Silver Foundation announce a matching challenge grant of up to $450,000 in support of the pioneering research efforts of Jakub Tolar, M.D., Ph.D., at the University of Minnesota.
·      The two foundations have joined forces to broaden community awareness about epidermolysis bullosa, or EB, and rally support for safer treatment options for children with the disease. 
·      Between now and December 31, 2012, EBMRF and the Jackson Gabriel Silver Foundation will match all contributions, dollar for dollar up to $450,000, towards gifts to The Fund for Epidermolysis Bulllosa Research. To date, $200,000 in contributions have been received. 
·      Contribute to the match now or contact Courtney Billing of the Minnesota Medical Foundation at 612.626.1931 or to learn how you can amplify your support of groundbreaking EB research. 

Because PUCK raises money exclusively for the research that Dr. Tolar is conducting, 100% of funds that we raise through our website, text-to-donate campaign, or fundraising events will be matched by this challenge grant.  So, if you donate $100 to PUCK, Dr. Tolar receives $200!  But here is where the math gets really fun... if you work for a company that has a corporate matching program, when you donate $100 to PUCK, they donate $100 to PUCK.  When that $200 arrives, the challenge grant matches it, and it becomes $400!  So, your $100 can turn into $400 for EB research just. like. that.

That is cool!

Now, here are the key points about Dr. Tolar's research as they were given to me, so that I may pass them on to you:

·      Jakub Tolar, M.D., Ph.D., part of the trailblazing University of Minnesota team offering experimental but risky blood and marrow transplants aimed at curing epidermolysis bullosa (EB), is pursuing innovative research focused on finding a safer treatment alternative for children afflicted with the disease.
·      One “natural gene therapy” approach involves taking advantage of healthy patches of skin that are present on some children with EB and  removing healthy skin cells, turning them into powerful stem cells called induced pluripotent stem cells (or iPS cells, which can be coaxed into becoming any type of cell in the body), expanding them in the lab, and giving them back to the patient where they would grow more healthy skin.
·      Another approach, “seamless gene therapy,” involves the removal of a patient’s skin cells, “cutting” the DNA at the mutation to correct the gene in the lab, “growing” those corrected iPS cells into blood-forming or skin cells, and reintroducing them into the child’s body.
·      These experimental techniques should eliminate the rejection risk normally associated with transplants because patients are essentially receiving transplants of their own cells.
·      In addition to helping children with EB, these techniques also could help heal thermal or chemical burns and treat autoimmune diseases of the skin.
·      This therapeutic concept—modifying a patient’s own cells to mend or prevent damage—potentially could be applied to help heal the heart after a heart attack or repair the pancreas of someone who has diabetes, as well.

Dr. Tolar doesn't want this BMT to become incrementally safer, he wants it to become EXPONENTIALLY safer, and we support him 1,000% in his quest.  We believe that if he can truly get the funding he needs to test these theories properly, well, we believe this is the closest thing we've got in terms of a viable treatment for EB.

So, what can we all do?  Well, look.  Let me be as honest and candid as I can (shock).  There are a lot of great people working and leading great causes for a great many things that need attention and transformation on this planet.  That is (hopefully) how it will always be.  Ang and I ended up in this EB world, um, NOT voluntarily, and at this point of our journey, we could...

1.  Walk away and move on with the blessings that are our two healthy children
2.  Get involved with one of the many wonderful programs like Camp Wonder
3.  Create as much attention and funds as we can to/for the treatment that we think will make the biggest difference for JEB-h and RDEB kids going forward until we run out of gas.

Honestly, #2 never felt like our fit.
#1 gets more and more tempting as time goes by... BUT,
#3 seems like the best way to honor Bella in the near future, given that she entrusted us with her life, and we chose to take a chance on a new era of EB treatment with that life, and in turn, lost it.

It's funny... Political Action Committees raise millions every year for various candidates' campaign budgets... with no guarantees that the candidates will even get elected!  Well, there's no promise (and Dr. Tolar will be the FIRST person to tell you this) that any of his ideas will work as well.  These theories "may not get elected" either, but are they worth no less a chance than a candidate running for office?

EB is the perfect disease to do this research on, because with a disease of the skin, you SEE the results of the treatment, and it is DRAMATIC.  Also, you can't experiment with stem cell transplants in populations where death may not be a daily risk... With JEB-h and RDEB, these kids are staring death in the face as a very real, very near possible - even probable - future.  That's just the way it is, and we're gonna continue to write about "another EB angel gets his/her wings" on facebook for a long time unless something shifts.

I think Dr. Tolar is that shift.  What he and Dr. Wagner have pioneered in Minnesota won't stay in Minnesota.  EB BMTs are being done elsewhere, including in Vietnam, believe it or not!  Minnesota is leading the way in this new treatment, and we don't want them to run out of funding.  We don't want the momentum that they have created to stop.

So... we keep at it.  Sharing our story.  Raising awareness.  Raising research funds.  Pushing for a safe, effective treatment so that 10 years from now, there are various treatments for kids with EB, and no child ever has to die from it again.  THAT is PUCK's vision.  However, our personal vision is that if we could spare just one family the scar tissue in our hearts and brains from giving birth to, caring for, and losing a child with EB, well, all this typing will have been worth it.

Here's how you can help (yet again)...

We have this big event in Minnesota on June 30th called TIME TO FLY.  It's a race/run/walk held by our parent organization, Children's Cancer Research Fund.  If you are local to the twin cities, come walk with us.  If you are not, donate to our team.  Here's the link to our page:


If you want to donate, just CLICK HERE

If you want to walk/run with us, just CLICK HERE

Once there, here are the step by step instructions for registering:

1.  Pick the event you want to participate in.
2.  If you want to make a personal donation, add it in the Additional Gift box
3.  If you are willing, please set your fundraising goal to $250. :-)
4.  If you want to purchase a sign, do so, or just click NEXT STEP at the bottom
5.  Add your contact information and click NEXT STEP at the bottom
6.  check the waiver box on the page and click NEXT STEP at the bottom
7. Review your registration summary and click COMPLETE REGISTRATION
8.  If there is money owed, fill in your payment information and click PROCESS.

Will you join us, either physically or financially?  You matter.  You make a difference.

Thank you for the difference you make.

God night.

P.S.  Local family news:  yesterday we hit Seaworld, and I think the only job cooler than the one I have would be Dolphin Trainer.  Yup.  Love Ali posing for '80's day at school, and check out mommy's awesome 'Julian-proof' hair cut!