Wednesday, September 14, 2011

Mito Awareness Week

While other diseases have an entire month devoted to raising awareness, Mitochondrial Disease gets one week.  A disease with no cure.  A disease which has taken so many children's lives in the last year I can't stand to even think about it.  A disease who I watch come out of nowhere and take, take, take and never cease. 

I would have never been aware of this disease if Trace didn't receive his diagnosis last October.  It has become a mission of mine to raise awareness and funds to support research which will eventually lead to a cure.  I know that cure will not come in Trace's lifetime, but ultimately want a cure to exist one day so the suffering can end.  That's pretty much all I can do for my baby.  That, my friends, is a hard fact for me to face.  I'm not a person who takes things lying down so to speak.  My life has brought many challenges to me, and no matter what, I've risen from those challenges with a solution.  Mito is a challenge brought forth to me for which I can't rise from with a solution, there's absolutely not one thing I can do to fix my baby - not one.  All I can do is watch this disease progress, hoping to stall it as much as possible along the way.  This awful thing has already taken so much from my baby boy and the rest of my family.  Before it I was blind to how life can change in an instant.  It happened and I can remember Trace's first seizure like yesterday.  That day was the first day of a new life.  Mito has changed my life forever.  Not all for the bad, I have met many wonderful people along this journey so far and I look forward to making many more lasting friendships.  Today I can't imagine life without Mito.  Sometimes I wonder - What if it would just go away?  How would I function in a "normal" world again?  The answer - I would be lost.  I mean without juggling appointments with numerous specialists, 18 doses of meds per day, and everything else, what would I do?? :-)  At the end of each day though this is my life and I'm so blessed to have it. 

Mito has had an impact on everyone who surrounds us – our entire family, friends, coworkers - everyone.  I have made it a point that all who surround us are aware and educated on mitochondrial disease.  These caring people also help spread awareness.  I am blessed to have their love and support.

In the next five months I am raising awareness and funds by hosting a golf tournament Oct 28th, fundraiser Jan 20th and our team will be walking in the Energy for Life Walk on Feb 4th.  I know that's a short period of time for all of that, but it's how it worked out, and I'm happy it did.  We are doing the golf tournament and fundraiser together with another family affected by Mito.  This family has become a huge part of our lives and I'm so very thankful to have them along this journey. The golf tournament will be benefitting the clinic where our children receive treatment.  The fundraiser, along with the walk, will be benefitting the UMDF.  I have already seen a wonderful response to the golf tournament and know it will be a great success!  I also hope our response to the walk will be just as great as last year. 

I'm pleased to say Trace is doing well right now.  I think the illness last month really took more of a toll on him than I thought it would.  Not much to report other than that.  We don't have any appointments until October.  Not one appointment in September - don't ask how that happened because I don't know - but I'm definitely loving it! 

Here's a pic of Trace from Summer 2008 -
before Mito - check out those cheeks!

Hope, Love, Courage &Faith,