September 9^th, 2009 was the day our lives changed forever. Our one and only son Trey, was diagnosed with ‘probable’ Duchenne’s Muscular Dystrophy on his 5^th birthday. In an instant our world was flipped upside down and inside out. Blood was drawn to confirm and in the days that followed life was a blur, I remember many of us staying up many hours of the night looking for something, anything the presented like Duchenne’s but wasn’t Duchenne’s. I remember praying, “Let it be anything except Duchenne’s, and if I can have this one request I will forever raise money for this cause”. 

 

Unfortunately, God may have heard my request but he didn’t answer it and Trey’s official Diagnosis came on October 3^rd, 2009. Trey has a deletion of Exon 52. We were told there is no cure, cures are being researched, and we just have to sit and wait. Truth be told, waiting isn’t an option for us. How do you let your child go? It is the most impossible thing a parent can possibly do. I do not want to be a parent that can say, I did all of these amazing things with my son, took him to Hawaii, played on the beach, went to Disneyland, and not take care of the one thing that is most important: Raising money to cure this horrifying disease.

 

Duchenne Muscular Dystrophy is a rapidly progressive, fatal neuromuscular disease, in which young boys are missing Dystrophin, a protein in the muscle cells that act as a ‘glue’.   Without this ‘glue’ the muscles suffer significant damage over a short period of time. Diagnosis is usually made between the ages of 3 and 6 years of age.  By age 10-12 most boys are using a wheelchair to maneuver. In the late teens most boys begin presenting signs of heart and lung function problems, and most do not make it past their early 20’s.

 

One in 3500 boys are diagnosed with Duchenne Muscular Dystrophy each year, that is approximately 22,000 boys born worldwide with Duchenne each year. Each day 2 boys pass on. It knows no race, no ethnicity, and it needs not a family history. THERE IS NO CURE…AND IT CAN HAPPEN TO ANY FAMILY.

 

On June 19^th, 2010 we will be summitting Trey up the Manitou Incline in Manitou, Colorado for the 2010 Climb for Duchenne.  

We are not asking for money to help with medical bills or for a trip or for a wheelchair or medications. We are asking for donations that will go straight into the hands of the researchers. (You will get a letter for your taxes).  Very promising research is happening right now to help cure our boys, and although with these drugs our sons will never be the next ‘Superman’ they will be able to live a relatively normal life, much like those with diabetes. Funding needs to continue to be handed to these researchers so that they are able to continue to work on these promising drugs.

 

Help the “Manitou Incline Cure Crew” reach our goal. Climb with us. Pray for us. Sponsor us. Donate for Trey.

 

Save this lifetime of boys. Save a son. Save a grandson. Save a brother. Save a nephew. Save a cousin. Save a Greatgrandson. Save a student. Save a friend. Please save my little boy.

 

 

 

 

***Want to Climb? Let us know!  The more people that climb the more of a statement we can make.  Let that statement be HUGE, MOVING, AND POWERFUL!

 

Contact Information:

Cori Steingraeber 719-287-9640

 

If you would kindly rather donate via check, please make the check payable to:

CureDuchenne

and give to team member.