Friday, April 11, 2014

"Alone we are rare, together we are strong" - Boston Strong!!

In 10 days, thousands of runners from all over the world will come together in one of the most famous cities in North America to run in the Boston Marathon.  This year, people from around the world have been encouraged to participate in their own home towns, because as we come together and form a unity of peace - the embrace is forever strong!  For the past 8 years, an amazing friend has been running in the Boston Marathon.  Phil Maderia's amazing strength and determination will carry him through each mile as he runs to raise money for rare diseases and in memory of our Mylee Grace and Wylder James.

We are honored by this amazing opportunity as he continues to share Mylee's story to raise awareness for Mitochondrial disease and other rare disorders through his efforts as a marathoner, ultra marathoner, and Ironman triathlete passionate for rare disease awareness!  Phil is the director of engineering at Genzyme and the founder of RunningForRareDiseases.  This year, he has put a team of 30 athletes, representing 21 rare diseases together to run in the Boston Marathon.  Together they form an amazing team raising money and awareness for this very special program!

Please help Phil and his team as they carry with them the amazing spirits and strengths from patients they will represent at the Boston Marathon.  Here is Phil's fundraising page for general donations:

Check out this year's Silent Auction items:

Phil also has a music playlist fundraiser, send him your favorite song and he will add it to his playlist as he runs the course!

Your support is greatly appreciated and to know our princess lives on in so many people is an amazing feeling.  With brave wings she flies... Thank you Phil for honoring our princess and our friend Wylder.  Just as you carry them both in your heart today and on race day -- you will forever be our champion who wins the race!

                 Forever Mylee's mommy ♥

Friday, February 21, 2014

Who is your Hero?

Do you remember being in school or a young child and someone asking you, "Who is your hero?"  A Hero is typically defined as a person who is admired or idealized for courage, outstanding achievements, or noble qualities.  Our family has encountered many people who have gone above and beyond in our eyes and be defined as courageous, who stands out in the crowd giving to others, and doing selfless acts to promote, advocate and help amazing causes in their communities.

This is one hero we are so thankful to also call our friend.  In 58 days, Phil Maderia and his Genzyme running team of 30 runners will be running in the Boston Marathon for rare diseases.  They are dedicated to making an impact on the lives of people fighting these incredible battles of diseases without treatment options or cures.

"Alone we are rare, together we are strong"

We are hopeful to be Boston bound to cheer on our hero who will be running in memory of Mylee and another dear little one (Wylder) who together are holding hands in heaven.

Please help support Phil's efforts at bringing awareness to raise diseases around the nation and world.  Each step he takes as he runs 26.2 miles is an effort on his part for this amazing cause.  Next week, on February 28th, the world will observe this day to raise awareness about rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

For Phil and his team and in memory of Mylee and Wylder and children like them who have fought or continue to fight rare diseases, please donate $26.20 on February 28th!  2014 Running for Rare Diseases Marathon Team.

Thank you Phil!  And thank you to your team of runners who together will run strong!  Our heroes, our friends!!

A Runner's Prayer
Run by my side, Lord - 
Live in my heartbeat. 
Give strength to my steps, 
As the cold whirls around me, 
As the wind pushes me, I know you surround me. 
As the sun warms me, 
As the rain cleanses me, I know you are touching me. 
Challenging me, loving me. 
- And so I give you this run.  
Thank you, God, 
for matching my stride. 

Wednesday, January 1, 2014

In her memory...

Our day today, the first day of the year 2014 is now coming to a close.  Dave has just finished his run for the day and he is feeling great!  We are less than 3 weeks now until Arizona's PF Chang Rock N Roll Marathon.  We are excited for TGen's Rare Childhood Disorders to be an official charity this year!  Team Mylee's Marathoners continues to train hard and fundraise with so much enthusiasm!!  We are so proud and excited for this fun event!!

Please welcome our new friend, Phil Maderia who has organized Genzyme Marathon Team to qualify and run in the Boston Marathon is coming to Phoenix to run in the PF Chang Rock N Roll Marathon!  He has asked to run in memory of Mylee in the 2014 Boston Marathon!!  We are excited to meet this amazing person who has created this awesome team of dedicated athletes who are making a major positive impact on the lives of people with serious diseases and illnesses.  This amazing team has teamed up with the National Organization For Rare Disorders to run for rare diseases. 

We are so grateful for those who continue to keep the memory of Mylee alive.  It is so important to us to continue to bring awareness to our communities about rare childhood disorders, so that one day, better treatments come available and those with diseases that have no cure can be found!  

For more information on how you can help support these amazing runners, please visit Mylee's Marathoners  or Running for Rare Diseases.

                              "Never Give Up..."