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.


 

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!

Sunday, January 15, 2012

Goodbye Little Light...


A butterfly lights beside us like a sunbeam
And for a brief moment its glory
and beauty belong to our world
But then it flies again
And though we wish it could have stayed...
We feel lucky to have seen it.

(Graphic Courtesy of Kristina Wyatt http://www.ebawareness.com/)

It is amazing how so few words can speak what is in one's heart.  This weekend I spent a great deal of time reflecting and trying to understand the waves of emotions I was experiencing. I was sad, confused, angry, you name it.  Despite knowing that it was coming, I was really unprepared for how this would affect me.  I just never realized how it would hit me when Tripp would have to go.  I have to admit, I feel a bit selfish.  Even though I know he is at peace, a peace I prayed for, I cannot help but wish he could have stayed.  I know that I will always feel his presence, for he has touched my heart in countless ways.  However, that really does not make goodbye any easier.
I wish I could have told him the many ways he made my life better, how his light came into my life and lit the path for me.  I wish I would have been able to share with him the ways that his courage and strength inspired me and so many others; to share with him all of the ways that he has changed this world, how amazing he and his impact truly were. I kept thinking of the last time I got to say goodbye and how I promised him that I would never give up.  I pray so hard that he heard me, that he understood and that he knew I would keep that promise.  I remember kissing his forehead knowing deep down inside it would probably be the last time.
Still I was not prepared for this...how can you be? I know however that eventually, time will heal and people will continue on with their lives, candle vigils will cease and posts will start to dwindle.  Things will go back to "normal" for the rest of the world and yet Courtney's world will remain upside down as she tries to navigate life without Tripp.  I cannot begin to imagine what that must feel like and it makes my heart hurt for her in so many ways. So often we focus on the dying and forget about the living.  Tripp's suffering has ended and he is finally has much deserved peace, Courtney's pain is just begininng and she needs our support as much now as she did before.  She has been so generous in allowing us to be a part of Tripp's journey, I hope that we can continue to be generous in our prayers and support helping her as she finds her way to a new normal.  This period of transition will not be easy no matter how strong she is...she has dedicated her entire life to Tripp.  She devoted every moment to his care and now that is gone and she is left feeling lost not knowing what to do.  Tripp is safe now; it is his mommy who needs us. So please pray for her as you have prayed for Tripp.  Help her to see Tripp's spirit each day so that her path can be lit with his light.

Tripp, once again, I thank you for shining your light for all of us and for making the world a better place.  Courtney I am blessed with your friendship and I love you dearly.  Thank you for courageously sharing Tripp with all of us and allowing us to love him and be graced with his spirit.



Donations may be made in Tripp's name to debra.org, or puckfund.org

 

Thursday, January 12, 2012

For this Tripp, I thank you...

I have spent the better half of the day in tears...I did my best to distract myself, but eventually my thoughts kept coming back to a little boy wrapped in bandages lying in the arms of his mommy...enduring a pain that none of us can imagine.   The pain of EB destroying the little he has left physically and mentally.  I have come to the realization that what I have been dreading since falling in love with this sweet boy was becoming a reality.  And although I do not understand the reason behind his suffering, I do know this, it has all been for us. For we have benefited so greatly from his being.
Tripp Roth has touched the lives of so many and he has brought tremendous change to the world.  He has captured the hearts of thousands with his amazing courage, beautiful personality and his glorious spirit.  Through him we have opened our hearts and learned to be more compassionate and kind.  He has taught us about unconditional love and faith...some of the greatest lessons I have ever learned.  Tripp has given me a purpose, he has inspired me to be a part of something bigger than myself and to try and make a difference. He touched me in such a way that I knew I was forever changed, and there was no going back.  There is something else...aside from teaching me these important lessons, he has also given me one of the greatest gifts that I have ever known, courage.  That may sound odd to some of you, but it is so very true.  Before Tripp, I lacked the confidence. As hard as it is for me to admit, I was afraid...always worried about what others would think, afraid I would fail.  I never took chances.  But, some how Tripp has given me the courage to fight for something that I beleive in without worrying about being judged or ridiculed.  He has given the me courage to speak up and be a voice for all of those who cannot speak.  The courage to make try to make a difference and touch the lives of others.
So, now here I sit trying to come up with something poignant and eloquent to say, but my emotions get the best of me and I have nothing...except, thank you.  Thank you Tripp for shining your light and blessing me with your beautiful spirit.  You have been such an amazing gift and I am so incredibly grateful.  I will never forget how you have touched my life and brought such a beautiful change.  I will forever remember your smile and your spirit.  I love you,  I am honored to know you and to have been a small part of this journey. 

Sweet boy, I am praying for your comfort and peace....as much as I hate to see you go, I know that you deserve to finally be free from your pain and agony.  I love you so very much and I promise you that I will never forget what you have taught me and I will continue to spread your light where ever I go.  I will not allow your suffering to be in vain, I will not stop fighting for you until EB is no more. 

I think this excerpt says it best:
...and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Saturday, January 7, 2012

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