Thursday, October 13, 2011

Running With Luci

Hi Everyone,
I wanted to pass on a message from our friend George. We were blessed enough to meet George, Mike, Jolie, and Luci, along with George's parents, while at the MAGIC Convention in July of 2010.
Aunt Anita and I sat in the front row in George's amazing testimony "It's Okay to Dream", where he told us his story of meeting Luci, running his first marathon, and tackling the Sahara Race. George is an inspiration to us all and to know that 5 more men have joined his cause to help raise money for MAGIC is wonderful!!

Dear Friends,

As many of you are aware…this November 20th...6 of us will be embarking on a 155-mile quest through the Himalayan Mountains in Nepal to directly support children with growth related disorders. This is very personal to me as my goddaughter Luci Horvath was born with panhypopituitarism. Every day is a fight for Luci but she is one amazingly strong and courageous little girl that inspires us all.

To make a permanent and lasting difference we have founded RWL (www.runningwithluci.org), a team of amateur endurance athletes dedicated to supporting Luci and thousands of other children across the country suffering from similar conditions. There is a lot misinformation in the medical community and the media and these families often face significant hurdles in getting proper treatment for these children. Fortunately there is an organization called The MAGICFoundation that plays a major role helping these families. RWL will be raising money for the MAGICFoundation to help these families deal with the day-to-day struggles. We have also been shooting a documentary over the course of the year to bring broad attention to these disorders.

I'm very proud of the incredible dedication and courage of my five teammates. This is a significant challenge for even the most professional of runners…let alone a group of backyard athletes like ourselves. I humbly ask that you support us in anyway that you can…either by following us on facebook, spreading the story, sending us words of encouragement or making a monetary contribution. It all goes a long way and will immensely help my five teammates as they attempt to tackle their first major ultramarathon. As always…thank you so much for any and all support. We (and more importantly the children) greatly appreciate it. GC.


Donate Link:
https://www.magicfoundation.org/www/docs/1008.1886/

Like us on facebook:
www.facebook.com/RWLuci

Documentary Trailer:
http://vimeo.com/26934026

Learn more about MAGIC:
http://www.magicfoundation.org/www

Race Website:
http://www.4deserts.com/beyond/nepal/

George G. Chmiel

Saturday, October 8, 2011

October Appointment with ENT

October 7th we met with ENT to talk about Daylon's snoring and his hearing. We were not able to complete his last hearing test because the right tube appears to be coming out.
ENT did confirm that one of the tubes is working it's way out and we will need to put new tubes in, but at this point it is too soon to do anything about it.
I showed him the video of Daylon's breathing while he was sleeping and he feels that it is positional and wants me to take his pillow away and see if that makes a difference. I feel that it does not matter what position he is in and called Dr. C to see if he could get us in for a sleep study. He is going to see what all that entails and get that set up for us.
Dr. C called me back and we are set up for a tour of the Sleep Center on October 24th. We will see where he will sleep and what all they have to hook him up to for the study.