The fight continues...

Yesterday was quite bittersweet as I said my final goodbye to sweet little Quinny.  It was an incredible honor to be there with her amazing family and friends...her Butterfly Army.  Such a precious soul who brought an entire community together to fight.  In her short time here, she inspired so many hearts to take action.  Because of Quinn, thousands of people have joined the battle against EB.  And although her time on earth is through, her purpose, her legacy continues.  This fight is far from over.  Quinn's story will continue to be told and she will continue to inspire people to follow their hearts and fight for those who suffer.  

Each day, Quinn was forced to endure EB and the pain and suffering that it brought.  Despite this, Quinn would smile her amazing smile and bring tremendous joy to those around her.  Because of EB, Quinn's time here was much too short.  However, the lessons she taught us are immeasurable.  They are lessons that we must now continue to share with others.  We much love one another without judgement; we must show compassion and kindness.  We must be joyful and embrace each and every moment.  Above all, we must have faith.

Quinn, thank you for shining your light into my life and reminding me to believe & to find hope in every situation.  I love you.

I know that there are so many who have followed Quinn's story who what to get involved and help.  Many of you know that Quinn was part of clinical trial that is being done at the University of Minnesota.  This summer, there is an awesome event being hosted my the Children's Cancer Research Fund called

 Time to Fly.  There is a special team dedicated to the research being done and I am excited to be a part of that team.  If you would like to participate or support TEAM PUCK, please visit my Time To Fly Page here: Time to Fly - Christie Zink's Team Puck Page

Someday we will find a cure, and sweet Quinn...you are a part of that cure!

Your Light Will Forever Shine...

Over the last 24 hours, I have cried, I have prayed, I have gotten angry and I have cried some more.  I have attempted to write a post and have walked away multiple times.  I am just lost, not knowing quite where to begin, not knowing what to say...I do not even know what to feel.  I am just plain struggling. I have searched my heart and tried to come up with something that could adequately express my sorrow, but the only thing that seems to come are tears.  It was not supposed to end this way...

Quinn came into my life late in the fall and I had the honor of meeting her in December, shortly after she received her transplant.  I will never forget the first time I saw her precious face and those stunning eyes.  I was immediately captivated by her and felt an amazing serenity in her presence.  I was overcome with a profound emotion that I really could not explain.  I spent quite a bit of time capturing her beautiful face, the light just emanated from her...she was something incredibly special.  I could look at her pictures over and over and I have.  I left that day once again being touched by a precious little soul and I again was changed.

I am not sure what it was about Quinn that caused me to feel an immediate connection with her, but when I saw her again, it became clear to me that it was something divine and it was meant to be.  What I felt the last time I was with her is something that will last in my mind forever.  Even though she could not speak, her eyes told me so much and I will never forget.  I love her, that is something that will never change.  She has touched me and has become a part of who I am.

I would often dream of Quinn and I playing in a park....enjoying the warmth of the sun and the lushness of the grass.  I believed it would happen and I wanted so badly for that.  Maybe that is why the last day has been such a struggle.  I believed in her miracle, I wanted her miracle, but the miracle that I wanted was not the same miracle that God intended.  That is often times such a difficult thing to accept.  Her purpose was full-filled and it was time to go despite what the rest of us wanted.

No matter how hard I tried to take comfort in the fact that she was no longer in pain and that she was safe in the heavens, I could not shake my sadness.  Last night I went to bed sad, confused and angry.  This morning, I did not want to face the day, I wanted to go back to before that phone call, back to when I was so full of hope.  I needed to know that she was okay, I needed to know she was still with me in some way.  For those of you who know me, you know where my heart is and why I am finding this so difficult

Then this morning at mass as we sang the opening song, I was again overwhelmed with emotion and consumed with sorrow.  I kept looking down trying to compose myself and when I looked up I could not believe what I saw...

A single pink butterfly on the cross of the Risen Lord.  Almost instantly I was overcome with a feeling of peace, I became completely calm.  My tears of sorrow became tears of gladness in a way. I knew right then and there that Quinn was with me...I have absolutely no doubt whatsoever that she was shining her light and bringing me that comfort that I so desperately needed.  She was giving me the sign that I needed to see; that she was okay and she would always be with us....she never really left.  Her beautiful spirit lives on in all of those who were touched my her...that can never die.

To my sweet friends, Marc and Mandy...you are AMAZING parents and you have given Quinn an incredible gift, the gift of sweet and unconditional love.  You brought tremendous joy into her life; she knew no sorrow, only joy.  My heart is aching for you, for I know that life without her will be difficult, but I also know that you have incredible strength and faith.  Quinn's light will continue to shine down upon you and light your way; guide you as you heal.  I love you both more than I can ever say.  I am incredibly grateful and honored to have been a part of her journey,  Thank you so much for sharing her with me and allowing me to love her.  I will never be able to thank you enough for the many ways my soul has been lifted by her...

Quinn, sweet girl, I love you and I always will.

I promise you that I will fight even harder and I will not give up...not now, not ever.

Just a quick not to everyone who has been so understanding and has left such incredibly sweet messages...I am so humbled by your kind words.  I know that Quinn was not my child, but I loved her nonetheless and her loss has been a painful one. It is going to take time to heal and I am so grateful to the entire EB community for understanding that pain and supporting me.  I love you all so very dearly and I do consider you a very special family, thank you for allowing me to be a part of such an incredible community.

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 .  

QuinnsButterflyArmy@yahoo.com

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

The heartbreak of EB

This week I found out that despite her tremendous will and fight, Quinn had to be intubated.  I cannot begin to imagine the feelings of desperation and defeat that must be felt when you put everything you have into saving your daughter and protecting her only to have to watch her continue to struggle.  I have learned that as EB ravages the bodies of these precious children, it also does a number on the minds and hearts of the parents.  Whenever there may be a glimmer of hope, it is often shattered, leaving the parents feeling broken and lost.  The emotional toll it takes is incredible...I have seen it first hand.  The amount of strength and courage required to face the daily challenges and the pain not only of the child, but of their parents is something that I cannot even put into words.  Please continue to pray for Quinn and all of the EB babies.

Butterflies are a breath of beauty fluttering by, they are mystery chronicled upon wing, they bring forth the grace and wonder of this world to our eyes everyday
~K. D’Angelo

Quinn is one among many who must endure the ugliness of EB.  You can find out more at EB Part of the Cure  Please help to help all the children like Quinn, give them hope, be their voice.  Let 2012 be the year for the cure!

Please follow Quinn's story at Quinn's Caring Bridge page