Thursday, May 31, 2012

I Refuse...

I know I have not posted in a bit, but I have been very focused on two very exciting endeavors (with a couple more on the back burner). I did however want to post a very quick thank you to all of those who have supported me as I prepare for this years Time To Fly in Saint Paul.  Although the event is a walk, I have registered for the run as a personal challenge to myself.  I am incredibly grateful to everyone who has helped me in my fundraising efforts as well as those who have made the commitment to join our team.  The race is June 30th on Harriet Island and so there is still time to register or donate if you would like.  This year we have a very rare opportunity to double our fundraising efforts thanks to a matching grant offered through EBMRF and JGSF.  That means that every dollar that we raise will be matched and 100% goes to EB research.  That my friends is pretty incredible.  Please consider supporting me and visit my page:



I have also been working on an awareness campaign that was "launched" on May 27th to honor Bella Ringgold's 3rd birthday.  I say launched because as soon as people received the kits that I put together , it was obvious that I was far from done. This was just the beginning of something that had the potential to be amazing!  I have received so many requests to open ordering again and how could I possibly say no to something that would bring about awareness and potential research dollars?  Well, I couldn't, so if you would like to participate in the I Refuse awareness campaign, please check it out...

Your Kit will look a little like this...

I think my little man says it best...


video

Thank you to all of you who are committed and dedicated in the fight against EB!


Wednesday, April 25, 2012

A little sunshine, a little hope...

Isn't is amazing how your life's path can be altered simply by "chance"?  Really, is it all just coincidence?  I happen to think it is not by chance at all, I happen to think that there is a plan that is unfolding, a plan set in place long ago.  Opportunities present themselves for a reason.  I have had so many doors open for me and so many opportunities to allow my life to be touched in special ways and I truly believe that it is not just luck or coincidence.  It is much more profound than that. I know that this is part of my purpose and there are some who do not understand and that is okay.  All that matters is that I understand, I follow what is in my heart and that I believe in what it is that I am passionate about.

Throughout this amazing journey I have been fortunate enough to meet some pretty extraordinary people and yesterday was no exception.  Charlie Knuth's spirit is one that can truly lift the heaviest hearts and light up a room in the most beautiful way.  He just sparkles and it is completely contagious!
Yesterday Charlie gave me a gift that was very much needed.  Seeing him and being swept up in his joy gave me a sense of hope that I think that I desperately needed.  His smile told me that everything that I believe in and everything that I fight for is worth it.

Two tears ago Charlie was suffering terribly and he was covered head to toe in bandages to protect his fragile skin.  All of the things we take for granted we re luxuries for Charlie.  Today, Charlie is an exuberant little boy with boundless energy because his mom and dad fought hard so that he could be a part of the clinical trials in Minnesota.  They fought hard to give Charlie hope and to give him a chance to be a kid.

One look at him and you can see the tremendous amount of happiness that he exudes...




Thank you Charlie for bringing me so much joy and giving me such a remarkable gift.

Charlie was not the only ray of sunshine in my day yesterday.  I would like you to meet Sahar, she is one of the sweetest little ladies and even though she is suffering, you would never know it from her beautiful smile.


Sahar is just over 60+ days and her journey is far from over.  I would love for you to take a moment to get to know her and visit her page: Sahar's Caring Bridge
As with many families going through this process, they are struggling emotionally and financially. 
A fund has been set up to help Sahar's family with medical bills and that information can be found on her page.



Sahar and children like her deserve a chance, a chance to be a kid.  They deserve a life without blisters and bandages; a life without pain.  Please take a moment to visit www.puckfund.org to learn about how they support the research in Minnesota and you can also visit the University of Minnesota Pediatric Blood and Marrow Transplant Center to learn more about this research.

If you would like to learn more about Epidermolysis Bullosa, you can visit www.debra.org

The time is now...you can make a difference, you can be a part of the cure.








Wednesday, April 18, 2012

Meet Jax

Lately I have found myself thinking about what life was like a year ago...before I was really aware of Epidermolysis Bullosa, what it was, and how it impacted the lives of those who suffer from it.  I guess it was safe to say that I was blissfully ignorant.  Of course I knew that there was suffering in this world, but unless you are personally affected, many of us really cannot even comprehend true suffering, true pain.  Many people who know me personally have difficulty understanding why I would invest myself in something so tragic...so sad.

I am not sure that there is a simple explanation to why I feel the way that I do.  I always say that I am just doing what my heart is telling me I need to do, I am trusting that it is the right thing.  Honestly, it is just something I feel and some things just cannot be explained.  It is not always easy, some days can bring feelings of defeat, but then others, pure joy, pure hope. Much like the day I met Jackson Baldwin.  Oh how sweet he is!  I can still see him sleeping on his mommy's shoulder as they came through the airport.  I wanted to cry, but all I could do was smile.  I was just drawn to his sweet face and how peaceful he looked.  I can still hear his laugh, I can still see his smile and I can still feel him squeezing my cheeks as I leaned over to give him kisses.  He is truly a precious little soul!
One look at his precious face and you are sure to fall in love!

Despite the blisters and the bandages, he manages to smile, laugh and really light up the room.   He truly shines HOPE!  Jackson will be taking part in the clinical trial that is being done at the University of Minnesota Amplatz Children's Hospital.  To find out more about the trial, you can visit: University of Minnesota BMT Program
Please consider being a bone marrow donor it is so easy and you could be the ONE.
Jackson has a long journey ahead of him; it has only just begun.  He still needs support and help.
To learn ways that you can get involved and help Jackson please visit:

video


Sunday, April 15, 2012

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!




Sunday, April 8, 2012

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.





Tuesday, April 3, 2012

Sweet Chloe...

The last few days have been particularly difficult as we say goodbye to precious Chloe Lee Jones.  This precious little angel spent all of her days fighting to survive, her entire 3 1/2 months were spent in a hospital with her mommy and daddy by her side.  I am having a difficult time trying to understand why her life and the lives of so many is one of intense suffering, it just does not seem right, it does not seem fair.  Why on earth would a child be brought into this world with no hope?

For a living, I am first and foremost a mom, a mom who happens to take pictures.  I capture all of the wiggles and giggles...the pure joy of what childhood is supposed to be.  There is no greater joy for me than to see the innocence and the purity in their smiles.  I truly love what I do and I love children.
Maybe that is why I am struggling so.  Maybe this is why I am finding myself so angry.

I really wanted to post something sweet and special for Chloe, but the reality is I just really cannot find the words.  What can I possibly say that will make this better?  Nothing.  A baby is gone and her mommy and daddy are left with only memories.

video

What I will say is this...it is not over...
I hope that we can all continue to fight and finally put an end to EB and to all of the pain and suffering that it brings.  Please in honor of Chloe, all of the EB angels and those who still face this disorder every day, tell at least one person about EB, post something on your wall, do whatever it takes to spread awareness and be their voice.  Do not give up, they need us to fight!  We can be the change!





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.