Wednesday, February 29, 2012

Rare Disease Day USA

Today, February 29th is Rare Disease Day.  Please let your voice be heard and be a voice for all of those who cannot speak.  Visit this link to support Rare Disease day and send President Obama, Members of Congress and other elected officials an important message.

Alone we are rare, together we are strong.


Monday, February 27, 2012

Hope and Heartbreak...

It is late tonight and I have been thinking about writing this post ever since I heard the news...

It was a story of hope for a precious little boy living in a group home in Washington state, a little boy name Seth.  Seth had never known a mother's love for he had spent his entire life in a group home. He was forced to face his EB alone, never having a mommy to comfort him and hold him.  Seth suffered from a severe form of  EB and unfortunately he did not receive the consistent care that someone with EB needs.  This lack of care left him confined to a wheelchair in excruciating pain alone and scared.  No one to tell him it would be okay, no one to wipe his tears.

This was all to change for Seth, for there was a loving family waiting for him.  The Knuth's already knew the challenges that EB presented for they had already adopted an amazing little boy Charlie who has EB.  They knew of all of the fears and anxiety that Seth faced daily and they knew the care and love that he so desperately needed.  Without ever meeting him, they fell in love and knew that they had to "Bring Seth Home".   It did not take long after Trish's announcement of the pending adoption that a group of amazing volunteers began working endless hours to come together and help the Knuth's; to help Seth.  People came together to help save this precious little angel, so that he may know an incredible love. 

Trisha was finally able to fly out to meet her son in February.  She spent countless hours playing, reading, just talking to Seth and loving him like only a mommy could.  I can only imagine how powerful this was for both of them.  For the first time Seth felt safe; he felt loved. And he was, the thought of leaving him was unbearable to Trish, he needed her.  She reassured him that she would be back, giving him her EB butterfly necklace to keep safe until she returned.

Unfortunately Seth became very ill after she left and as soon as she returned home, she found herself back on a plane to Washington.  When she arrived, Seth was incredibly sick and weak.  Trish stayed by his side and told him of all of the wonderful people building his bedroom and how all of these people who had never met him loved him so dearly; all of the lives he had already touched including the family whom he had not met.  His poor little body had fought so hard for his entire six years and it was just too tired.  Sadly, with his mommy by his side, her head on his, he faded away.

Even though Seth had spent years suffering alone, he was given an amazing gift in his last days.  The gift of a mother's love; the joy of a family he had not yet met and the comfort of knowing that he would never have to be alone again.

We will never know why Seth's journey had to end when it did, but his story, his legacy is far from over.  Seth will live on in the many hearts that he touched.  He will live on in what has become known as "Seth's Village" for somewhere there is a child whose life will be saved because of it; because of Seth.

Seth, although we did not get to meet, you will always be a very special Little Light.

Thursday, February 9, 2012

Another Milestone...Happy 6 Months Quinn!

I have always said that blogging is not my forte, I am just not a writer...I take pictures...capture moments.  However there are those moments when I am touched in a way that compels me to want to share it some how.  Today was one of those days...

Some of you have been introduced to Quinn and you have been following her BMT journey via her Caring Bridge Page.  Well, I was fortunate enough to be able to visit her again today.  Seeing her sweet face is always a treat, but there is something else, when I am with Quinn, there is a calm about me, a peace that fills me.  It is an amazing feeling, one that I have only experienced with one other person, Tripp. I am not sure what it is or why it happens, I can only say it must be divine and there is nothing like it.

Yesterday was particularly special as I was able to be in the room when Quinn received "Healing Touch", an energy therapy in which practitioners use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health. (Find out more).  I had no idea how powerful that would be, as Quinn received this, I could feel it through my entire body.  Tears came to my eyes as I experienced an amazing release and felt incredibly uplifted.  It was truly an amazing experience.  I did not think that there was any possible way that anything could top that feeling until I was preparing to leave.  I approached her beautiful sleeping face bent over to whisper "I love you" and what happened totally moved me.  Quinn opened her eyes and gave me what appeared to be an intentional blink and a then a look that seemed to say "I love you too."  There is no doubt in my mind that is exactly what she was doing and I most certainly felt it!

Many have asked me how I can possibly bring myself  to do this, and I am always perplexed by that.  How can I not?  I am drawn to these children and it is something that my heart will not allow me to ignore.   Not only am I inspired and in awe of their courage and perseverance,  I am captivated by their shear being and I love them.  

Besides, take one look into these beautiful eyes and tell me you would not fight for her..

So with that, I want to say Happy SIX month birthday little lady!!  You continue to inspire those who know your story with your will and your courage. We continue to pray that you beat the odds!  You are a precious miracle and we see that every single day!!  I love you sweet girl!!

Marc and Mandy are amazing parents and their love for their daughter is truly beautiful.  They are so thankful for all of the prayers and support that they are getting from all over, that is all that they have ever really asked for.  However, they have some amazing ladies who are passionate about helping Quinn and they would love for you to join them and become part of Quinn's Butterfly Army,  They have had some beautiful shirts made up that are available for purchase with the proceeds going to the Quinn Seymour Benefit Account

If you have questions or would like to order a shirt, you can contact .  

Please continue to pray for Quinn as she fights the good fight!