What Can YOU Do to Help?

After reviewing the current 15 that is being voted on in the "Kona Inspired" contest, I can assure you that we have a huge task before us to get enough votes.  The top two leaders right now have nearly 180,000 views.  That makes this task for my video getting enough votes look impossible, but all have seen that "Anything is Possible", so know we just need to create a winning strategy to get enough votes.  

With the remaining time that we have between now and July 4th, we are looking to get us much medial exposure to our efforts, and YOU can help with this.  I have learned that if I tell a news media channel our story, they very rarely look at it since it is coming from me and not a supporter.  What you can do is all of the news stations and media publications on our behalf and ask them to tell our story.  Here is an example of what was recently sent out by one of the Shawn's Anomaly volunteers who just sent it to NBC Nightly News on my behalf:

I am writing to ask if you would consider my friend, Matthew Murphy, as a story for your "Making a Difference" segment of the NBC Nightly News.  I know that his story would be great for this segment because it is very inspirational, and Nightly News could do a lot to help fulfill the final chapter of the story.

Shawn, Matthew’s son, underwent 3 surgeries to repair a urological condition that affects 1 in 35 million children.  The doctor that did the surgery had only seen 12 other cases, but Dr. Cisek attempted the uncharted surgery.  The 3 surgeries to repair Shawn were a success and started a huge change of events to help others in Matthew's life to prevent other families from going through what they did without education, hope, and help.  Matthew started a foundation a little over a year ago after his son's life threatening medical journey as an infant to help those families.  

The Shawn's Anomaly Foundation is one of a kind that is now catering to the 1-in-30 families that are affected by congenital birth abnormalities. Please see more about the foundation on the website, www.shawnsanomaly.org.

Inspired by his son's miraculous journey and proving that anything is possible; Matthew decided to raise money for the cause by going from an overweight smoker to an Ironman Triathlete.  After 2 years of training, Matthew successfully completed the Ironman Texas, on May 19^th, to become "Shawn's Ironman", but his journey is not over till he can cross the finish line at the Ironman World Championship in Kona, HI.  He now has that chance to do that with your assistance and the help from online voting from the general public.

Getting into the Ironman World Championship that you see on NBC is very hard for average athletes because of the qualification standards.  For an athlete like Matthew, it is nearly impossible without outside assistance.  The "Kona Inspired" program, introduced by Ironman, now makes it possible for Matthew to get into the race and tell his story to the world. Through this program, athletes submitted their videos to be voted online by the general public. The 45 semi-finalist who receive the most online votes will be narrowed down to 8, after a second round of voting, to compete in the Ironman World Championship and share their inspiring stories during the television coverage of the event. Matthew is one of the semi-finalist.  Voting for Matthew's video is between July 4th - July 18th the on www.konainspired.com website.

Matthew's story and journey not only helps raise money to help other families, but it also has inspired several people to start their own fitness journey, including my own, who now join him to raise money for Shawn's Anomaly.  I also volunteer for the foundation to further the mission to provided education, hope, and help to families affected by congenital anomalies.  I know that exposure on your program would greatly help get Matthew to Kona, and further the mission to help other families in need.  Thank you for your consideration.

P.S. There is a lot of HD video and pictures of Matthew's events, and he was recently featured on a local NBC affiliate.  Please see the story here: http://www.click2houston.com/news/Houston-father-takes-on-Ironman-in-honor-of-son/-/1735978/13405010/-/p7876dz/-/index.html 

This is a REAL way you could help with the Mission.  Strength is in numbers.  Now, I am not saying that you should send a detailed message like this, but even calling and emailing the news stations and media publications about this effort on our behalf would really help spread the word which in return would result in more votes during the July 4th-July 18th voting period.  Here are some contacts locally in Houston.  Our focus should be there first: 

KHOU 11 (CBS)	assignments@khou.com	713-526-1111
KPRC 2 (NBC)	desk@kprc.com	713-778-4910
KTRX 13 (ABC)	news@abc13.com	713-666-0713
Houston Chronicle (Features)	features@chron.com	713-362-7171
Houston Chronicle	news@chron.com	713-362-7171
Channel 39 (CW)	gjaffe@39online.com	713-781-3939
Channel 39 (CW)	smark@39online.com	713-781-3939
Channel 39 (CW)	trigia@39online.com	713-781-3939
Channel 39 (CW)	tvirgil@39online.com	713-781-3939
Channel 39 (CW)	steve@39online.com	713-781-3939
KRIV 26 (FOX)	newsdesk@fox26.com	713-479-2801

I Can't Sleep...My Mind Is Racing!

As I start this post I look at the clock on my computer to see that it is 3:45am.  I have seen that number several times before since I have started this journey, but never has it been for this reason.  My body wants to rest, but my mind is not allowing me to because I have too many things that are running around in there.  All I can think about is Liam, Kona, The Movie, and the Future.  I am not sure how this post will finish, and it may be only for myself, so please keep that in mind before taking the time to read it.  I can also tell you that I have permission to speak about the information below from Liam's family.

For nearly a week now, I have been working with Liam Lyons family through Shawn's Anomaly.  If you have not had the chance to follow the posts on www.shawnsanomaly.org on the right side of the page, Liam Lyon was born nearly 16 months ago with 1/2 a heart.  He had a heart transplant at 6 months old that should have saved his life, but he has had complications with it every since.  Liam's family has been trying so hard for months to get Liam in to Texas Children's Hospital so he could get the care of some of the best doctors in the world, but they have underwent major hurdles to get him transferred.  Most of the reason that the transfer has not happened is because they have not been able to find an accepting doctor at TCH.  Of course, that got me involved because I know how great TCH is.  I mean, they saved my son's life!  I just did not understand why they were not allowing Liam to come to get treatment.   

Of course, you can't fault anyone at TCH for not wanting to accept Liam.  After all, Liam is really getting very good care at The Children's Hospital at St. Francis in Tulsa, OK by Dr. Barton.  I don't envy his job at all.  He has done a lot since Liam was transferred into his care from Arkansas Children's Hospital pretty much as a hospice patient since the surgeries and Liam's current position does not make him a candidate for another heart transplant.  Unfortunately nothing has seemed to work.  You would have thought he would have given up a long time ago, but Dr. Barton keeps pressing on for Liam and trying everything possible to help.  He has tried already to get Liam into TCH, but unfortunately the decision was made not to accept transfer because they felt there was nothing else that TCH could do better.  I cannot fault their decision at all.  

Recently, they found that there is now a hole in Liam's trachea from the tubes they put down his throat to help him breath.  This of course changes everything because now the ENT doctors at Tulsa do not feel comfortable performing the very risky surgery on Liam to fix the hole.  Again, Dr. Barton has requested that Texas Children's Hospital to accept Liam now hoping that a doctor at TCH will be more willing to perform this extremely risky surgery.  After all, how many doctors do you know want to perform a surgery on a child just to watch that same child not make it out of surgery.  The chances are very low that they will find a doctor who will be willing to accept a transfer at TCH, but at least TCH is considering it.  

The transfer to TCH would really be great for not only Liam, but the family.  I know that they have been through a lot in the past 16 months.   Liam's Aunt already lives here in the Houston area and has really been leading the charge, but you can tell in her eyes that she is tired.  They are all exhausted, but they don't give up on Liam.  You can also see in Liam's eyes that he is a fighter.  He does not want to give up either, so because he doesn't, the family doesn't either.  They are praying daily for a miracle, and now so am I.

As parents you may sympathize with their situation, but you may never understand how hard it is and how alone you sometimes feel during the process.  I pray daily that you don't.  My wife and I do, and just sharing our story and our experiences with Liam's family seems to help.  We can't do much financially right now through Shawn's Anomaly because we are just getting started and the donations just don't seem to match up with what I would love to offer them, but we are trying our best to be there for this family and others just like them.  After all, that is what Shawn's Anomaly is really all about.  It is not about finding a cure for Shawn's conditions or about saving kids lives.  That is what the hospitals are for.  Shawn's Anomaly is about providing education, hope, and help to the families of these children. We want to let them know they are not alone and there are other people who have, "Been There, Done That!"  That statement, believe it or not, goes a long way. 

I often feel that I don't explain that mission better, and for that I hope that you will truly accept my apology.

I realize now after seeing what I have written, it would be crazy for me to continue and tell you the other reasons why I can't sleep in this post, so with that being said:

To Be Continued...

In the meantime, I ask you to pray for this family, pray for the decision that TCH is currently underway making, pray for Liam, and lastly pray that I get some sleep.  I am going to be useless to this family and other 1-in-30 families that are dealing this birth anomalies if I can't get any sleep. 

Calling All Shawn's Anomaly Supporters

Do you want to see the Shawn's Anomaly Mission (Education, Hope, & Help) in full action?  Well this is where we as supporters can come together to help little William Elija Lyon, affectionately dubbed Liam.  This family is desperately trying to get their baby to a doctor at TCH that can help with Liam's congenital heart anomaly.  We have contacted the family to see what we (Shawn's Anomaly) can do to help, but we need all hands on deck to brainstorm on what we can do.  Please see the latest correspondence:

5/20/12 Last night Whitney called me to let me know that they were doing "parent care" - which is like the step down unit at ACH - the parents room in with the child and do all the care - just as if they are home. This is a BIG step towards going home. So for those that read this part of the page - we have a couple of options for transfer. Our first choice was to get an accepting doctor at Texas Children's and transfer him for a complex discharge. Basically get him here and evaluated and then discharge him to home (my house) after they were certain we were prepared and they had a good baseline on him. Not happening. Our next choice was to transfer to a transitional hospital in Houston - it is kind of a skilled nursing facility for chronically or serioulsy ill children - and it would only be long enough for them to evaluate and make sure we were prepared for home care. The hitch is they are concerned about Liam and want to be able to reach out to TCH if there is a problem - which is totally understandable - he can be a handful! This option is pending - and we would really love to see this happen. And if he transfers hospital to hospital, he will get a medical transport. The last option is he gets discharged to "home" from St Francis. They have said he can't go to his home in Cameron - it is too far from a large children's hospital that is equipped to deal with transplant kids. So "home" would be to somewhere safe in Tulsa. But Liam needs specialists in cardiology, pulmonology and trach care, nephrology, enterology and developmental. All systems are pretty optimal right now so we really want to get him to Texas as soon as possible! If he is discharged to "home" we will have to provide the transportation - that means an approximately 11 hour drive or a private flight in a small plane with an unpressurized cabin. We have volunteers to fly (3 pilots) and a plane, and even a pediatrician who has volunteered to fly with him. So we wait to see if he gets ready to discharge before he gets transferred. Either way, he is really, really doing good. And we got a crib off Craigslist - once the folks heard his story they wouldn't take any money for it. Whitney and Cheyanne fly to Houston tomorrow. And we are going to meet with some people and go see the transitional hospital. Keep us in your prayers - and keep Liam in your hearts - we are still following the path our hearts and prayers are leading us down. 33000 strong - what a journey this little boy is taking us on. Just keep swimming, just keep swimming.

As I have seen what the masses of support can do in the past, let come together for this little miracle and help his family.  If you can offer any type of assistance, please contact us immediately at shawnsanomaly@gmail.com

We Are A Semi-Finalist!!!

This just in from the World Triathlon Club:

Congratulations!

You have made it to the Semi-Finals of the 2012 Kona Inspired Contest!

You have been placed in Round 3.  Your video will be available for viewing and voting beginning Wednesday July 4^th through Wednesday July 18^th.  The top two (2) Video Entries with the highest score based on Public Evaluation (only with respect to the applicable Final Evaluation Period) in your group will be deemed the winners of Round 3 and will be notified via email.  If any tie score occurs in the Public Evaluation the tie will be broken by the Panel judging which of the tied Video Entries best represents, in the opinion of the Panel, the Ironman mantra "Anything is Possible."

Additionally, on July 20^th, the Ironman Panel of judges will announce two (2) wild card entries chosen from the 39 semi-finalist who did not win their round.

Thank you to all that have voted so far.  We would not be where we are if it was not for help.  We are fortunate that we will be able to get the word out about voting, but we now need to get everyone ready to Vote for our video between July 4th and July 18th.  I will be sending out an invite to everyone where you can invite all your friends as well.  It will probably take 50,000 votes to get this, but I fee we have a great chance.

Thank you again, and stay tuned for more details as soon as I receive them.