Local Teen Gives Speech On Charcot Marie Tooth Disease In Support Of Friend

I know my son has great friends who care about him and support him but I guess I never knew how dedicated some are.  How some friends will take the time to learn about your disease and stand up to talk about it without even being asked.  This is exactly what Brady Steele did. 

We met the Steele family last summer when Carter started Marcus Cross Country.  Adam, Brady's older brother and Carter quickly became instant BFF's and so did his mom and I (at least I think she is my BFF).  Since Carter was always over there he and Brady naturally became friends as well.  When Carter was diagnosed with CMT of course they were the first to find out.  The Steele family quickly became our rock during these hard times.  Adam and Brady always watching out for Carter, listening to him and supporting him through all of this.  So I guess it shouldn't surprise me to find out from Kristi that Brady took matters in to his own hands. 

Today, Brady gave a speech on Charcot Marie Tooth Disease in his leadership class in support of his friend, Carter.  He could choose any topic to give a speech on and he chose to give a speech on Carter and CMT!  WHAT A REMARKABLE YOUNG MAN!  Brady knew that September was CMT Awareness Month since he posted it on his Facebook and he took action. 

THANK YOU BRADY FOR RAISING AWARENESS FOR CMT!  THANK YOU FOR BEING SUCH A GREAT FRIEND TO CARTER AND RISING UP TO THE OCCASION! WE ARE TRULY BLESSED TO HAVE YOU AND YOUR FAMILY IN OUR LIVES. 

I of course cannot leave Adam out.  Adam, Carter's BFF is doing his part too.  He was the first to change his profile pic on Facebook to a CMT Awareness Avatar, posted about CMT Awareness on Facebook, stood by Carter Saturday night as he ran the mile, volunteering at our bake sale and more.  He is always, always asking what he can do to help. What Adam doesn't realize is..... he is already doing the most important job, he is supporting his best friend just by being there for him when he needs him.  THANK YOU! U KNOW WE LOVE YOU!


Until Next Time..................What are you doing to raise awareness?

"Stay Strong, Believe"~Carter Hayes

Charcot Marie Tooth Awareness Month Is Here!

Tomorrow is September 1st and the start of CHARCOT MARIE TOOTH AWARENESS MONTH!!!!!
I know a lot of us have been so busy getting ready to raise awareness. I wanted to say some shout outs to some very special people who I think do an outstanding job raising awareness for Charcot Marie Tooth Disease. 

• Kaitlyn and Lori Mattheis with Mission Happy Feet.  This mother, daughter duo do such a great job getting the word out by making bracelets with feet on them, blogging, holding events, making videos and more! Way to go guys!
• Elizabeth Ouellette with Charcot Marie Tooth Association. I don't even know where to begin...She does it all! Videos, school events, public speaking, fundraising, and the list goes on.  She volunteers for the CMTA and gives it everything she's got! Kudos Elizabeth!
• Melinda Lang with Living Well With CMT.  Melinda has done some amazing things for CMT. Not only does she blog about it and hold fundraisers but she also received a CMT Awareness Month  proclamation from the State Of New York and the City Of Albany!!!! Way to raise Awareness!
• Carol Liu with National CMT Resource Center. Wow this is all I can say about Carol.  She like Elizabeth seems to do it all.  Blog, tweet, editor in cheif for HNF, attorney, mom, oh and yeah wrote Arlene On the Scene.  Like I said WOW! 

I could go on and on about people from all over raising awareness and funds for CMT.  People posting on Facebook, tweeting, blogging and fundraising.  We all are stepping up to plate to help everyone who is affected by Charcot Marie Tooth.  I APPLAUD EACH AND EVERY ONE OF YOU! 

I have made some great friendships so far in this journey, friends from all over the world!  The CMT community is AMAZING!  To my new friends Carly Andrews, Melissa Wilson Arakaki, Melissa Lykins you all have been a great support and have done wonderful things for CMT.  Keep up the outstanding work!

Until Next Time.............."STAY STRONG, BELIEVE"

How Having The Support Of One Amazing Cross Country Team Can Encourage A Fighter to Fight!

I know I have written a lot about how Carter inspires me or how he makes me proud, well I am doing it again.  Only this time I am writing to tell you about an awe inspiring moment that I believe will inspire others to NEVER GIVE UP, FIGHT WITH ALL YOU HAVE, AND STAY STRONG, BELIEVE! 


Last night Carter decided to go and support his cross country friends at their 1 mile time trials.  Every year at the beginning of the season, Coach T does what is called SOS under the lights.  At 9 p.m. all Cross Country kids meet at Marcus Track and Field and do their 1 mile time trial under the lights.  Parents, friends and supporters show up to cheer them on and its just a really cool, exciting event.  Actually, its a huge deal this is where the kids basically see who is on Varsity and obviously who the fastest is. 


Well, after they all ran their time trial Carter was telling his BFF Adam, hey I want to run the mile (he misses CC so much).  So, Adam got a stop watch and Carter lined up at the start line and they yelled GO! By the way, he wasn't dressed in running clothes! As Carter starts running he is joined by the Hendrix twins, John Shirk and Sean Duffy who are running with him, encouraging him to keep going and push harder.  At one point John told Carter, this is going to hurt when its all over but its going to be worth it.  On the sidelines, the rest of Marcus Cross Country is cheering him on.  As he is running his stomach starts to hurt, his chest and so forth.  Does he give up?  No way, Carter pushed through the pain in his chest, stomache, knees, achiles heal and feet to cross the finish line in 5:31!!!!!! 


 HE RAN THE MILE IN 5:31 WITH NO TRAINING OVER THE SUMMER, NO RUNNING CLOTHES, NO PREPERATION WHAT SO EVER!  THIS WAS PURE DETERMINATION, AN I CAN DO MOMENT, I AM A FIGHTER!  I CONTROL THE DISEASE THE DISEASE DOES NOT CONTROL ME! 


A MOMENT IN TIME ME, AS A MOTHER WILL NEVER FORGET. 


A MOMENT WHEN ONE OUTSTANDING TEAM CAME TOGETHER TO ENCOURAGE A FIGHTER. 


THANK YOU MARCUS CROSS COUNTRY TEAM FOR YOUR SUPPORT AND ENCOURAGEMENT! WE ARE TRULY BLESSED TO HAVE YOU IN OUR LIVES.  THERE JUST SIMPLY IS NO BETTER TEAM THAN THE MARCUS CROSS COUNTRY TEAM!To "celebrate" they took Carter to I-Hop.  When he came home he was so happy, elated, and full of energy, surprising it was after midnight, he hurt but he said it was all worth it.  He said he misses that rush you get when your running.  I know what he means I miss it too. 


Until Next Time............GO MARCUS CROSS COUNTRY!