Thursday, November 14, 2013

Doing Good feels Great: The highpoint of the Hope Gala of the Icla Da Silva Foundation

Now that I have "recovered" from the HLH700 of the Akin Foundation (crazy!), the Ronald McDonald Gala and the fun Hope Gala of the Icla Da Silva Foundation I wanted to get back to my blog which I have shamefully ignored.  These past months have been amazing, not just because sitting on a saddle for 7 hours is such good feeling (try it!) but mainly because in 10 days I have seen so much good that despite my Wall street background I can happily say that there is much good out there.  Meeting so many people who truly feel that Doing Good feels Great was a very enriching experience.  And yes it felt great to do good.

Our friends, family, V and I have always been big believers in Paying-It-Forward.  Whether it was cancer, diabetes, autism ... when we could we would all help by donating money.  Life was calm, sweet and in hindsight slow for V and I, but giving a $100 here and there made us feel good.  Little did we know how far those few dollars reached; how many people needed it and how many people would benefit.   It was a small thing we did and..hey!.. we even got a tax deduction, what more do you want?

It was not until V was diagnosed with Type 1 Diabetes, late onset of juvenile diabetes, that we started realizing that illnesses were real, that illnesses can affect anybody at any time and that it puts people's lives upside down in a fraction of a second.  V suffered a major blow, but she conquered it and became stronger from it as time passed.  Giving became more important to us, we even committed with friends in cycling 20 miles for a cure for Diabetes in the Tour the Cure.  Our team was named Super Heroes In Training (later we found out in short we were S.H.I.T. ... hello!!).  With the support of friends and family we raised significant funds for the American Diabetes Association.  It opened our eyes to the fact that people really needed help.  As years went by we raised more and more funds.  So it made us feel good, we got a bigger tax break and... hey!... it actually helped people, what more do you want?

Then s.h.i.t. actually happened, HLH didn't just turn our world around.  It rocked our world to the core.  And because of the thousands of people (friends, family and strangers) that showed support, the doctors, nurses, medical and non-medical staff, cincy angels and many others we were able to glue all the pieces back together by saving Miabelle and rebuilding a close to normal life.  Thanks* to HLH and the BMT journey we were introduced to many amazing people and organizations of which the Icla Da Silva Foundation is one.  Who?!  What?!

We had barely heard of Bone Marrow Transplants, marrow/stem cell donors and certainly not of the Icla Da Silva Foundation (www.icla.org).  After a little reading and speaking with Airam Da Silva, president of the foundation, we were informed that Icla Da Silva Foundation was by far the largest not-for-profit recruiter of marrow/stem cells donors for the marrow registry (Be the Match) in the USA.  The Icla team registers approximately 38,000 people every year (note this is huge), putting it at the top of all recruiters worldwide.

And yet they banged the drums loud and clear in an effort to raise donors for our little girl, with Japanese DNA (V? Explain!),  who had a 1 in a million chance of finding a donor.  And despite the odds, they spread the word in the USA at the speed of light as time was ticking away fast.   Airam knew very well that without a donor Miabelle had no chance.  He had lived it himself years prior when his young sister Icla passed, from Leukemia, at 13 ... because the world could not find her a donor.  Icla, like many others, do not even get a chance to fight another day.  So Airam mobilized volunteers, his team and tens of thousands in dollar of funding to organize all these drives.  All this to give our little girl the chance Icla never had: that one chance in a million to fight back.

This is our second year at the Hope Gala of the foundation.  We enjoy every minute of the event.  From the auction to the good company, the good music and the great speakers it is a perfect event for a noble cause.  But the highpoint of the evening is a true magical moment that makes you realize that heroes don't just live in books and movies: A donor meeting the recipient for the first time.  In other words, the patient meets for the first time her/his hero without which she/he would have died.  It is a very powerful and emotional moment that no movie or actor could ever reproduce.  During this year's Hope Gala a young girl met her hero.  What do you say when you meet your hero? This moment captured in this video is priceless.  Heroes don't wear capes, they are ordinary people among us doing extraordinary things.

http://video.ktla.com/A-bone-marrow-donor-reunites-with-the-girl-whose-life-he-saved-25346801?freewheel=91045&sitesection=wphl&VID=25346801

Please join us next year for this moment!!  It was amazing!! If you want to join next year, email us at gillierfamily@gmail.com and we will send you an invite.

It took everyone 5 long months, lots of effort, money and time, and yet no adult donor was ever found for Miabelle increasing the odds that she would not make it.  Finally two less than perfect matches (reduces survival chances) from umbilical cord donors were found.  Although the less than good odds Miabelle is a happy 3 year old toddler today. Our commitment to the Icla Da Silva Foundation is to pay it forward so no one has to suffer the excruciating pain of waiting months for a donor and not finding one.  We are committed to their cause of matching donors with patients so heroes are born and lives are saved!  Today supporting the foundation makes us feel good, we still get a tax break, we help people and... hey!!... it actually saves lives, what more do you want?

Doing Good feels Great!!!  Join us: Please support the Icla Da Silva Foundation by donating and register to become a donor today.  Help save a live!!!  Become a Donor, Become a Hero: http://www.icla.org .

Sleepy sleep
Papa


*"Thanks" is a tough word to use in the context of HLH because still today we hate the three letter illness more than anything.



Friday, October 4, 2013

Day 700/700: May the yellow jersey go to all the HLH Angels and Warriors out there

Yellow Jersey is defined by my friend Wiki as, in the Tour de France (most recognized cycling event in the world), "the leader of the general classification wears the yellow jersey".
http://en.wikipedia.org/wiki/Yellow_jersey

Although in any regular Tour the Yellow Jersey would have gone to Bolt (Justin) for being the only one who finished every single mile of the 700 mile "joy" ride and who did it without breaking a sweat.  Although Energizer Bunny (Doug) would also deserve a yellow jersey for perseverance.  Knowing Bolt and Energizer Bunny they would have quickly denied this glorious jersey and rightfully re-gifted it to the true heroes for which we cycle, namely all the HLH Angels and Warriors out there who fought and fight hard.

Courtesy of the Matthew and Andrew Akin Foundation

The last day was a rather emotional one and very confusing.  We were happy to be off the saddle (my tooshy was very happy) but sad that this journey was ending.  During the rides, we cried, we laughed, we used words we would never repeat in front of our kids (good thing I swear in dutch so everyone thought I was describing my happiness climbing hills), we tried to support each other when things were getting hard due to painful memories or just physical limitations, we thought often of the angels, we send much positive thoughts to those fighting today and we remembered our own kids' journeys or, in the case of Sean, his own painful journey through the horrible HLH experience.  A true camaraderie was formed among all of us bound by the same illness yet despite the different outcomes.  The ride was one of healing, remembrance, awareness and support.

We had accidents, physical breakdowns, rain, sun, hills and HILLS and more HILLS, dogs and lots of them, bike breakdowns, stinking road kill, fire ants (love them little critters) and rattle snakes (Yikes!), but despite these limitations at least one of us made it to the finish line.  Oops!  Cat is out of the bag (love US expressions - Who keeps cats in bags?).  Let me re-phrase, we all made it to the finish line and we all did 700 miles but not necessarily on a bike.  Some of us got off the bike to walk the hill, some had bike problems or physical limitations and thus were car-pooled around for a few miles.  But one thing is certain when we fell we got back up on the bike regardless of the limitations.  The point being that we all crossed the finish line with Bolt at Cincinnati Childrens Hospital, where the global HLH Center of Excellence resides.

Here is a clip of what Cincinnati Childrens organized to welcome us.  Nurses, doctors, HLH families, friends, family, our spouses and medical support staff all came to welcome us on our arrival.  We even had a doctor ride with us the last day, you go Ashish!!  This is what I always loved about this hospital, they care, they appreciate and they want to help.

Congratulations!!!! Bolt (Justin) leads the pack to the finish line.


The Akin Foundation team raised $100k.  Thank you to all!!!

My best surprise was... wify, aka V, surprised me at the finish line although she told me for weeks now that because of the kids' school and Miabelle's fevers she could not meet me in Cincinnati.  "What do you mean you cannot come to Cincinnati to see your husband finish the HLH700 (European Translation HLH1100)?"  A la New Yorker: "Are you kiddin'me?"  For 700 miles I tortured my brain with the disappointment that I would be finishing the tour hugging a tree instead of my wife.  And trust me we saw enough trees on them hills to the point I do not desire to hug a tree for comfort.  But that little Puerto Rican from The Bronx surprised me together with our Cincy Angels and family, Rick and Libby.  It was an amazing and emotional surprise, it took me awhile to realize V was standing in front of me.  Girlfriend...you wait ... your surprise is coming when you won't expect it.  mmmmmm...isn't that the point of a surprise?  Thanks honey for coming, I won't forget that is for sure.  Blew me away... I love surprises!

The girls and mama made a poster!  V waiting with Cincy Angel Libby.

The arrival was amazing, like heroes on bikes we rode through a crowd cheering our arrival.  It felt great to do good.  But what was more amazing was the heartfelt speech of Bolt (Justin) and the check he handed over to the president of Cincinnati Childrens for a whooping 100,000$ in benefit of the HLH Center of Excellence.  We in name of all those inflicted with the HLH experience thank you, all them unsung heroes who gifted to our cause, for your generosity, support and kindness in helping us making certain more children get to live to see another sunrise.  We all reached our fundraising goals thanks to you.  Thank you!!!

If you still wonder why we cycle, this is why we cycle: Hannah 5 year HLH survivor with Sophia HLH Warrior at the HLH Conference dinner kick off at the Cincinnati Zoo.  Help us save kids like Sophia!!!  Fighting we will and we hope some of you readers will join us next year because the more riders, the more support, the more children will be called survivors.  You go Hannah and Sophia, keep inspiring us!

Priceless: Hannah 5 year HLH survivor with Sophia HLH Warrior.

The ride was fun and ended with a beautiful bang but all riders would agree when I say that there was no greater honor to cycle next to the fathers who lost their children (Matthew and Andrew Akin as well as Annie Myers) to this illness as well as Iron Man Sean from Canada, a HLH and BMT survivor, who despite injuries and his hip replacement kept going through rain, sun, dogs and hills.  Take it away Sean for all them HLH warriors who need some inspiration:

A word to all them HLH warriors by Sean HLH Survivor.

Hannah, Sophia, Maya, Mira, William, Miabelle and Sean,
keep inspiring the world and all them HLH families.

Your strength gives us hope.


PS: To Patrick, our HLH Cyclist in spinning classes, we are done riding now, you can stop spinning :)  Thanks for your commitment to us and your friend Bolt (Justin).






















Some picks:
 Sean upon arrival

 Cyclist in disbelieve of the crowd that should up

 Bolt (Justin) with Dr. Filipovich

 Some of the heroes of the day

 Papa... or the elephants in Cincy Zoo who showed up for dinner.


See you next year again on the HLH700!!!


Sleepy sleep,
Papa













Thursday, October 3, 2013

Day 6 644/700: Dedicated to Christian Ritterbusch

We have dedicated days to several children inflicted with HLH.  Although we would love to be able to know all the kids out there and dedicate to all of them a day, regretfully there are only 7 days.  This does not mean we do not think of them or not dedicate our cycling to them on the contrary we dedicate this entire cycling ride to all HLH warriors out there.

Today we dedicate the day to a special family the Ritterbusch family and their son Christian Ritterbusch.  Christian is an HLH warrior.  Regretfully last year he lost his brother to HLH.  It is hard to imagine losing one child to HLH but then to have a second child inflicted with this illness is unimaginable.  On top of that his mother is now dealing with her own health challenges and is being checked herself for HLH.  I hope there is a god and that he finds mercy for this family who has gone through hell once and now has to go to it again, not once again but possibly twice.  Please send to all our HLH warriors lots of positive thoughts and prayers, and keep this family especially in your thoughts.


Courtsey of the Matthew and Andrew foundation.

644 miles done - 58 to go!!!!!!

Today was a good day: nice weather and beautiful towns but a little warm.  We all departed after little sleep from yesterday's fabulous Hope Gala.   Soon after our departure two cyclist were retired Speedy and Achilles.  Speedy had problems with his clips on his shoes and could not properly clip in thus needed a bike store for repair.  And Achilles, although every morning he gets on the bike in an effort to keep trying despite the injuries, could not put any pressure on his left leg due to the continuing pain in the left knee and achilles.  Result: Iron Man, Bolt and Energizer Bunny were the only ones left.

By lunch time the support team had found a bike store in the middle of nowhere in Kentucky, Shelbyville.  Speedy got his shoes fixed and as soon as they were fixed Bolt showed up on his bike.  Together they cycled happily ever after into the sunset.  Like true heroes they cycled for hours and hours today.  Chased by more dogs, turkeys and whatever else in nature that does not like bikes.

Can you see the exhaustion on Speedy's face.

Iron man and Energized Bunny were even approached by a gentleman informing them that they should wear white socks so drivers could see them better.  I guess the lights on the bike and the colorful shirts are not enough...white socks?! Seriously man, white socks to be visible?!  They also encountered a man who with a big smile on his face was trying to kill a small snake with a twig.... a twig branch against a snake?!  Sure!  Why not!

Now when all of this was happening Achilles was passed out sleeping in the RV-van drugged up with Hydrocodon-Acetaminophen, a painkiller that makes you sleep like sleeping beauty...although Achilles in tights is less appealing.  Tomorrow we try again...and if not next year we are back to try again.

In the late afternoon Speedy was retired again, issues with his bike. The issues are still resulting from the bike pile up on Day 2.  It was advised for Speedy to retire for the day.  Around the same time Iron Man had knee problems and was also retired for the day, after an amazing day of cycling.

Energizer Bunny and Bolt were the only cyclist to finish the day despite the dogs, sun, heat, trucks, etc ...  Congrats to them because this ain't no joy ride that is for sure.

Tomorrow is our last day cycling.  58 miles of the 700 are remaining.  58 miles to the finish line at Cincinnati Childrens Hospital, the Center of Excellence in the world for HLH.  We will be excited and happy to arrive at destination but we are sad because it is the last day of an amazing trip with amazing people.

PS: Achilles (me) will ride straight into the ER to get the left leg looked at because walking with a stiff leg all day long is certainly not fun.


Sleepy sleep
Papa



Day 5 Miles 70: Dedicated to Anna Conger

The ride on Day 5 from Nachville TN to Bardstown KY 70 miles is dedicated to Anna Conger, a 4 year old princess warrior.  Anna fights so hard to overcome this illness, like all these kids do, which truly deserves a lot of respect.  As we cycle and dedicate these rides to all these children, it makes you wonder why these kids get served such a harsh destiny.  Keep fighting little ones and by doing so create your own destiny.


Courtesy of the Matthew and Andrew Akin Foundation

For the dedication video please click: http://youtu.be/a7b073dw1x0

The day started with a deadline: 70 miles by 2pm.  Why you may ask?  Because we are a bunch of crazy people, in case you had not figured that out by now.  A few months back I was asked to be the honoree at the Hope Gala of the Icla Da Silva Foundation (largest bone marrow recruiter for the Be the Match Bone Marrow Registry in the world) for my contribution to the organization.  A great honor I accepted with much appreciation.  The issue was that after accepting the honor the date of the HLH700 Bike Rike, to which I had also committed, was moved from the end of August to the end of September.  Dilemma, I now had two things I truly wanted to commit to at the same time!!  I called Speedy (Dennis) and told him of this problem (as he is always my guest at the Icla Gala and committed to the HLH700) to which he responded that it isn't crazy but just an organizational problem.  And he was right.  So long story short we had to cycle 70 miles by 2pm to then change in tuxedos, jump on a flight from Kentucky to NYC for the Hope Gala, fly back, sleep and saddle up.

As if the time deadline was not enough, the day started with rain and wet roads.  We all departed together but not soon after Bolt and Speedy took off like torpedoes and the three musketeers (Iron Man, Energizer Bunny and Achilles) were left behind in their dust cloud.  It was such a beautiful and nice ride with small little (and not so little) rolling hills and towns.  We passed by Munford TN known for the Battle of The Bridge during the Civil War.  A gentleman at the museum where one of our support members went stated that the true end to the war was at this bridge.  We have seen lots of remembrance of the Civil War in the south but in this town it seemed that the civil war never ended.  Every corner of every street you could see something about the Civil War.  Also some of the people seemed still stuck in time.  Beautiful but scary how history was so present.  Not sure I should have sang the song “New York New York” while cycling through the town.  Them Yankees!

 After some 15 miles Achilles had to retire from the pain in his left knee and left Achilles.  It was disappointing but the pain was rather excruciating despite the Aleve and Hydrocodon-Acetaminophen.   I was drugged up and still pain persisted every time I put pressure on my left leg.  Bolt (Justin) had recommended me in the early stages of the course to find motivation in saying the names of my daughters every time I push one of my legs down, just like he says the names of his two sons Matthew and Andrew, HLH angels (Read www.matthewandandrew.org).  Bolt is an amazing cyclist but his determination and dedication to this ride leaves many of us in shock and awe.  However when you realize that this ride is his ride with his sons, you understand even better the importance of this ride and why he does it to help others.  He is an amazing gentleman who despite his unmeasurable personal loss he and his wife dedicate their time to the other HLH families.  Thank you! 

To come back to my cows and chickens (or whatever the american expression is).  After a few miles I told Iron Man (Sean) and Energizer Bunny (Doug) to go ahead and just leave me behind like road kill because I was holding them up but they insisted on the fact that no man should be left behind and that there was no such thing as the two musketeers.  As a New Yorker I would say that they are a “A bunch of nice guys, you know what I am saying”.  The two musketeers continued their road slowly, steadily with determination, while Achilles Road Kill was picked up by the Canadian support car of Sue and Mike.

There is nothing more disappointing than when your body gives up on your mental dreams but I guess just like with HLH children sometimes the body is not strong enough yet their mind continues to fight.   The key is that when you fall you must always get up.  When failing you must always try again.  And although quitting is easier, perseverance is the only thing that turns dreams into reality.   I will try again tomorrow and the day after and the day after....and eventually next year (yes I said it...next year I am in again).

 Iron Man recovering from a heavy day

Energizer Bunny always happy and joking even after 100 miles.


The rest of the day was not without interesting moments for the 4 cyclists left.  Bolt (Justin) had warned us that dogs do not like cyclists too much and that last year Energizer Bunny (Doug) had a dog nibble at his ankle.  So while rolling over the beautiful hills in Tennessee they discovered that also in Tennessee dogs like cyclists.  From a pit-bull to two little shit-shoes (also better known as Shih Tzu) and than some other ugly untrained dogs all ran after all 4 cyclists to get a piece out of their ankles.  I cannot understand that people do not have electric fences or a regular fence realizing that if their dog bit someone they would have a serious issue.  Dogs!  Just imagine you are cycling 100 miles, you are tired and exhausted and suddenly out of nowhere you here barking and growling.  Imagine a huge pit-bull starts running full speed after you and you have to put it to a run with your bike.... after 100 miles.... tough!  Energizer Bunny (Doug) decided today that he will not run but rather bark back.... that didn't work...running was finally the only option.  Run Forrest!!! Run!!!!

Finally everyone ended at the hotel by 2pm, we rushed and ate, washed up, jumped in tuxedoes, ran like a bunch of penguins to the airport in the middle of nowhere (there were more crop-dusters than passenger planes), jumped on the plane by 3.30pm and flew out to NYC to attend the Hope Gala of the Icla Da Silva Foundation by 6.30pm.  It was the first time to NY for some of us cyclist.  Sean, Dough and Mike had never been to the big apple.  And like Justin said “Thank you for my Make-A-Wish come true!” (Make-A-Wish foundation is a foundation granting wishes to children affected by often fatal illnesses)

We could not believe that the 2pm deadline was attained and although the president of the Icla Da Silva Foundation, my good friend Airam, was very concerned of the honorree not arriving in time, we arrived with 30 minutes delay to the cocktail party.  Incredible!!!!  The organizational skills of the Speedy organization are impressive!!  But where there is a will there is always a way.  Note that the cost of this trip was not covered with the donations of any of the foundations of the HLH700 or Icla Da Silva Foundation, we are all committed in making certain that every dollar you donate goes to the cause and not to tuxedoes and airplane tickets.  We are committed to supporting our HLH and Bone Marrow families and bare the entire cost of the HLH700 cycling trip as well as the Icla Da Silva trip ourselves because that is the right thing to do.  So rest assured your money goes to the many children that need it, and we are committed to making certain it does.

Why would the HLH700, Akin Foundation, HLH Center of Excellence and the entire team support the Icla Da Silva foundation efforts? HLH and Bone Marrow transplants are 100% linked because the only way to control HLH is by bone marrow transplant, which without a donor is impossible.  Without donors these patients would never get a second chance to life.  Miabelle like many would have died if we did not find a donor.  The Akin Foundation supports the HLH Center of Excellence which focuses on HLH awareness, research and family support, whereas the Icla Da Silva Foundation focuses on recruitment of donors and patient-family support.  Both organizations are linked at their core and essential to the survival of our little HLH warriors.

The Hope Gala was amazing and among the best Gala’s I attended in my Gala career, which is long and sometimes painful.  The Ritz-Carlton was an amazing setting, the crowd was interesting and pleasant but the high moment of the night, the most emotional moment of my year, was the encounter of a donor with the patient he saved.  Many of you reading this blog are certainly familiar with death of a loved one, which is painful, but when you see how a young man saves the life of a little girl by becoming a donor to a complete stranger you realize that heroes do exist.  The moment of them meeting for the first time at the gala was magical, baffling, stunning, emotional and most of all it creates hope that some day no kids or adults will die because they could not find a donor.  Thank you for sharing this moment with us!!!

 Iron Man (I wish I had his strength)

 Energizer Bunny (Always running at full speed)

 Bob, he eternalizes our experience.

Don Bolt.


It was so much fun to get off them saddles and enjoy a night of laughter and tears with my teammates and friends, my family, my NY friends and my wife who was absolutely Stunning... and I mean Stunning with a capital S.  My teammates had to drag me out of the gala like a little kid kicking and screaming being dragged out of a toy store... that stunning!  Thank you all for coming to the Hope Gala of the Icla Da Silva Foundation in support of awareness and registration of donors, in the support of creating hope for those who deserve a second chance to life.  Hope lives thanks to all you unsung heroes, my friends, my family and all the strangers who donated!!

At the end of the Gala we flew back to Kentucky (please don’t ask me where in Kentucky because it was truly in the middle of nowhere).  We arrived around 1.30am in the morning (as the flight takes about 2 hours including boarding).  Everyone was so tired but seemed to have had a lot of fun.  And despite the early morning bed time, we will get up and proceed with 94 miles of cycling!!!!

We will prevail!

People, rightfully so, told me that doing the HLH700 was nuts, people said that attending a Gala for Hope during the ride was impossible and people said we would be crazy to do it all.  Well them people were right: we are crazy, it is impossible and doing the HLH700 is nuts.  But what them people underestimated is that a bunch of crazy yet motivated minds with the inherent desire to persevere in the support of HLH and Bone Marrow will do everything humanly possible to support life and hope for those to come.

I hope some of you blog readers, who have not yet, will join us in this battle.  Spread the word of HLH through this blog, raise money for the HLH Center of Excellence (www.matthewandandrew.org), support Bone Marrow families by donating to the Icla Da Silva Foundation for all those who need a bone marrow transplant and more importantly become a donor by contacting the Icla Da Silva Foundation at www.icla.org.

Remember you are the hope they need!


Gala Speech:

“Let me start by thanking Airam Da Silva, the board of trustees and the employees of the foundation for this great honor.  I also want to thank my friends, family and all of you for attending tonight’s gala, and I want to give a special thanks to Dennis, Ann, Sean, Mike and Justin, who have flown in with me today all the way from Kentucky to show their support.  Finally I would like to thank my fabulous wife who without her I would not have been able to support the Icla Foundation nor would we have been able to save our child.  She was and is my partner through good and bad.  Thank you all.

Last year I stood before you and told the story of our daughter Miabelle’s difficult journey back to health following her diagnosis of a rare and often fatal disease called Hemophagocitic Lymphohystiocytosis or HLH.  Tonight I’d like to take the time to give thanks to all of those who helped our family face the unthinkable and find the strength to carry on.

When I think back on what Miabelle went through during her battle, I am often awestruck at how incredibly strong and resilient a baby of 11 months can be.  While my wife and I were coming undone she remained a happy, silly, giggly girl.  Unphased by the chemotherapy, or the weekly lumbar punctures; the masked strangers or the needles; the 16 medications or the central lines pertruding from her chest; the solitary confinement or the absence of her twin; the 30+ surgeries or the countless beeping machines attached to her.  Miabelle was simply Miabelle.  But she was our thoughts, our dreams, our prayers, our life, our reason, our everything.

While I would like to think that my wife and I were ourselves throughout the journey, our family and friends can attest to the fact that we’ve all been scarred.  For Miabelle’s struggles were not Miabelle’s, they were ours, and our loved ones, our friends, our coworkers, our clients, our communities.  Anyone and everyone we came in contact with during that 2 year struggle were impacted.  And everyone of them took our story and shouted it out from the rooftops.  Save Miabelle! 

My wife jokes that God’s inbox must have been full from all the prayers.  During the campaign to find her match some 15,000 new donors were registered.  That is not because of me or my wife, it’s because of people like you.  Strangers who heard the sound of our despair and said “there but for the grace of God, go I.” 

Their stories are too many to tell.  They were the colleagues who adopted our family and became our Food Angels.  They were the friends and friends of friends who helped us move.  They were the doctors and nurses and counselors and therapists who were by our side every step of the way. 

Recently, my wife came across a link to our blog, posted in Belgium by a stranger with thousands and thousands of followers following the airing of our family story on the Belgian news.  Then there’s the story of the stranger seated next to Miabelle’s godmother flying in from New York who listened to her tell our tale of woe and posted it on her blog of 50,000 followers.  Or the leasing agent in Cincinnati who upon learning what brought our family to Ohio, organized a Bone Marrow Donor Registration Drive on her University campus.  The list goes on and on.

The honor tonight goes to all of them.  They gave us back the hope we nearly lost.  And together with Airam and The Icla da Silva Foundation, they are the true heroes of the night.  The unsung heroes who sounded the alarms, beet the drums, rang the bells and screamed from the mountain tops – Save Miabelle.  And thanks to you and all of the unsung heroes of the Icla da Silva Foundation – hope lives.

And remember when making your donation tonight, the Icla Da Silva Foundation is Hope; for everything else there is your mastercard!  Thank you.”


 Sleepy sleep,
Papa




Tuesday, October 1, 2013

Day 4 Miles 115 Total Miles 468: Dedicated to Aspen Franklin

Today we dedicate our ride to Aspen Franklin, a 19 month old girl in Seattle, who was recently diagnosed with HLH.  Not only does her mommy carry the baton for her little girl but her daddy is in the army on duty overseas.  We hope that her daddy can be recalled soon so that they can fight this horrible war destiny has served them with as a family.  Aspen stay strong like a soldier does.  You are an HLH warrior princess and we as HLH families leave nobody behind.  You are on our thoughts and we will cycle hard in the hope it will make a difference for you and your fellow warriors.  

To all HLH warriors see this little video where survivor Sean (Iron Man) let's you know what kept him going. Thank you Sean!

Courtesy of the Akin Foundation

Today came close to the most challenging day a cyclist can ever encounter.  Justin enjoyed it because the more challenging it gets the bigger his smile but the remaining two cyclists Dennis and Doug had less joy in the 5000 feet climbing.  Yes, you read correctly 5000 feet!!!!!!  The hills, which I would call mountains, were long and high draining energy quickly.  Both Dennis and Justin finished strong with Justin hitting an average speed of 18.1 mph( including mountains).  Seriously, he is unstoppable.  Dennis went strong and finished right after Justin.  Doug, the energizer bunny he is, kept his pace steady but strong.  And even with steep hills he kept cycling at the same rhythm as if the road was flat.

The road took us from Florence-Alabama to Nashville-Tennessee.  

Top speed attained: 52.5 mph by Justin, not for nothing we call him Bolt.  His bike was rather shaky at that speed.  As to Dennis hit a solid 52 mph with a bike that was rattling from the injuries on Day 2's bike pile up.  Really impressive to all three!!!!  

Once arrived Dennis went to a bike store in Nashville, Country Music capital of the world, and they informed him that the rattling was the result of his handlebars being loose.   Hold on!  Say that again!  Handle bar on a carbon bike was loose.  No good!!!!  So after the pile up accident Day 2, Dennis and Ann went to a bike store to get the bike repaired.  Well I guess they didn't do a good job and it could have cost Dennis his head.  The danger of a loose handle bar on a carbon bike is that it can and eventually will break.  Now imagine flying down the mountain at 52 mph and ... ooops... sorry, handle bar breaks.  Needless to say, the picture would have been very ugly.  So I guess someone was looking after our Speedy Gonzalez to make certain he survived the up and down hills.  Good to still have you around for another few days Dennis!!!  Bike is now repaired properly.

They finished the natchez parkway, which is truly impressive!

Sean and I, both with injuries, had retired from the ride for the morning but when reality was presented with steep hills it was recommendable to avoid further injuries.  No worries after popping painkillers like candy and icing the injuries until the skin was raw, we will try tomorrow again and hopefully the knees and achilles will hold.

Tomorrow only 70 miles of winding roads starting at 6am till 2pm, then 8 of us fly off to NY at 3pm as Achilles (Olivier) is honoree at the Hope Gala of the Icla Da Silva Foundation.  It is thus key I do not add to more injuries.  Yes these 10 days we focus on awareness in an effort to help other people.  

But before I go, during bed time Miabelle asked Mama "Mama where is papa?" to which Noelie answered "Papa is riding to get money so no more kids get sick".  I am so proud of my girls and hope that you will donate so no more kids get sick.

Please support our efforts and donate:

Sleepy sleep,
Papa


Day 3 Miles 353: Dedicated to Aaron Peterson

Day 3 120 Miles

Today we dedicate our ride to Aaron Peterson, a 36 year old young man who regretfully is one of the rare adult HLH cases known currently.  He is at Bellevue Hospital in NY and can use some serious prayers and positive energy support.  Aaron was going to propose to his fiancĂ© but not much time before he became very ill.  Now he is on a ventilator fighting hard.  Today we cycle for you Aaron, hang in there, don’t give up!!

Courtesy of the Akin Foundation 

Day three was full of interesting experiences.  The day started at 7.30am with rain, chilly and wet roads.  The first few miles were miserable but the rest of the day weather was ideal for a long stroll on the bike.  No sun, no rain (just wet shoes) and clouds making the weather our friend but just, like with HLH, you think things are safe and sounds the hills kept climbing and steeper …and …. steeper, it was as if there was never a downhill.  Bolt (aka Justin Akin) led the peloton like a true leader while Iron Man (aka Sean Feltoe, HLH/BMT Survivor), Energizer Bunny (aka Doug Myers) and Hercules (aka Olivier Gillier; Hercules due to his abnormally massive calves) were dragging after him screaming “slower slower bolt!!!”.  Note that a peloton leader takes about 30% more effort than the followers as he creates a wind tunnel for the rest of the team.
Early morning prep with support staff Ann. 

The leader split from the pack at mile 40.  Like a true lightning he ripped into the road.  His tracks are now a legend in Mississippi.  They are named the Bolt Tracks of Mississippi.  We nicked named him Bolt because he truly goes up hill at  25 mph speed…ridiculously fast...without even cracking a sweat!!  Note the rest of us social cyclist go up the hill at 12 mph when we feel ambitious… thus rarely.  Bolt is a legend and we expect him soon to start the Tour de France.  Go Bolt Go!!!

The rest of us misfits, namely Iron Man, Energizer Bunny and Hercules, stayed behind and dragged our tooshies up the hills begging the lord for mercy.  Climb…climb…  One optimist called Iron Man said full joy “Oh look a down hill”; but the other optimist said “yes but that means we have an uphill to follow”.  The total feet climbed were about 3000 feet in total by end of day.  So when I say climb it was CLIMB BABBY CLIMB!

Regretfully the climbing came at a cost.  Hercules was downgraded and renamed Achilles because by lunch time Hercules’s Achilles (aka Olivier) had given out.  Iron Man (aka Sean) also needed to retire as his knee gave out again.  Iron Man still fights many HLH/BMT scars from all the steroids.  May the blog state that he is truly a hero to all us cyclist for his strength and his positive attitude. The drop out of 2 cyclists left 2 cyclists standing, but to the rescue came Speedy Gonzalez (aka Dennis), with a repaired bike and a ready to go desire to climb hills.  Speedy took the baton from Iron Man and Achilles.  Iron Man and Achilles were very disappointed that after 300 miles they needed to stop and ice many Achilles and even more knees.  Like Speedy after the accident, both of the dropouts rather suffer the wrath of hills than bail out and leave the team alone.  It was a disappointment.



Notice the abnormal size calves of Hercules, now Achilles

The next leg (30 miles) of the tour was as brutal as the beginning with more long stretched out hills but clouded and cool.  Speedy (aka Dennis) came back from the accident like a super star, hanging along Bolt (aka Justin) mile after mile cycling a good 18-20 mph.  These guys were on a mission to finish this day with a new record.

There was true joy for everyone crossing the border between Mississippi and Alabama.  A milestone, an achievement!  Sweet Home Alabama!


Mile 85 (after a 30 mile rest), Achilles (aka Olivier) annoyed with the reality that his body was failing the ambitions of his mind got back on the bike.  I hear you readers say "not smart" to which I will respond "Achilles was a warrior not a genius" . If children fight HLH with all the energy they have than Achilles can get moving.  The one legged cyclist decided to finish the day, which proof to be a bad decision.

Mile 95, Iron Man (aka Sean) joined in with the same thought.  There is no giving up.  It is ok to stop, it is ok to take a breather but you have to keep going and focus on what good is to come.  This is the attitude that kept him going through his HLH experience.  Stay positive, keep fighting and inspire yourself with the belief that things will be better.

So Speedy (Dennis) and Bolt (Justin), ripped ahead towards the Tennessee River (magnificent) and finished the day glorious and strong.  Whereas Achilles (Olivier), Energizer Bunny (Doug) and Iron Man (Sean) crawled slowly but surely with or without injuries, but with a sense of humor that was unparalleled.  Who knew that Energizer Bunny (Doug) was a talented comedian who could imitate Droopy like no other.  The issue of laughing while cycling is that your energy gets drained even more but it was so funny and eventually we all arrived at destination.  All with a big smile and lots of pain.  

Iron Man Sean with Achilles (me) at the Tennessee River.
Amazing view!

Doug is nicknamed Energizer Bunny because with no training last year and no training this year (and I mean he ain't no gym type of guy) he keeps cycling with the determination of an olympic athlete.  When I asked him "Doug how do you keep going", he answered "it's my Annie who keeps me going.  I miss her very much but when I am on the bike it's as if she is with me and gives me the energy to keep cycling and smiling".  Annie was his little girl who died from HLH 2 years ago.

An amazing man with a endless endurance.

On this ride I have met amazing people like Justin and Doug who have the desire to help others despite their own unmeasurable loss, who smile and laugh every moment of an excruciating bike ride despite their personal grief, who want to help because of their strong belief that it's the right thing to do, and who keep inspiring people along the road because of their strong desire to create hope for those who follow.  Justin (Bolt), Doug (Energizer Bunny), Sean (Iron Man), Patrick and Dennis (Speedy) are truly an inspiration.  I hope people will join us on next year's ride because cycling with these guys is an amazing experience.

The medal of the day goes to Bolt (aka Justin) and Speedy (aka Dennis) for speed but the medal of perseverance goes to Iron Man (Sean) and Energizer Bunny (Doug).

The medalists Bolt (Justin) and Speedy (Dennis)

PS: Cyclist Patrick who had to drop out of the tour due to work, goes every day to the gym and cycles 50 or more miles in solidarity to the team.  THANKS PATRICK for the support!!!!  You are missed and your gym cycling during your travels is much appreciated.

 Tomorrow 115 miles.


Sleepy Sleep
Achilles