Emma's Fight: How You Can Help

 

 

Born Strong

 

Some kids are born stronger than others.  Some have to be, for they are preparing for the fight of their lives.  Metaphorically and literally.  Such is the story of Emma.  Her mom, Teresa, recounts that Emma, as a newborn, while being tied down and bound to a hospital mattress for medical tests, lifted her tiny little legs and the hospital mattress, simultaneously.  She is a fiesty one.  I think that is a good thing. Fiesty ones don't give up on the fight.

 

At 4 days old, she underwent open-heart surgery.  On her 11th day on this earth, her parents were given some information that would change their lives, and the life of their tiny daughter, forever.  The diagnosis: Fanconi Anemia (FA), which is an incredibly rare genetic condition.  The prognosis: Terminal.  That conversation with specialists was a tough one, but it paled in comparison to the discussion that Emma's mom would one day have with her daughter about the circumstances and truth about her condition.

 

Fast Forward

 

Fast forward 10 years and look how that tiny baby grew (pictured above).  Emma is gorgeous.  Part of her condition means that she is far smaller than her peers.  As a 10-year-old, she is about the size of a 6 or 7-year-old.  She has multiple other issues due to her FA.  She has had numerous invasive medical procedures.  Below is a video compilation of family footage, which is a sampling of some of what young Emma has endured. The video is tasteful and lovingly done.  It is made to raise awareness of FA, and to garner support for its cure.  (The video does include real footage and images of medical procedures.  You may wish to pass on the video if such images are disturbing to you.)

 

 

 

 In a Mother's Words

 

Emma's mom explains it best, so I'll let her take it away:

 

When Emma was born, she required open heart surgery at four days old. Because of that, they had ran some genetic testing, and much to our shock, we found out that Emma was born with a really rare genetic disorder called Fanconi Anemia (FA). It causes bone marrow failure (aplastic anemia) and different types of cancers, often including leukemia (AML). We knew from the time she was just 11 days old that she would eventually need a bone marrow transplant and that she would then die from cancer at a later point, even after a successful transplant. 

We've watched her bone marrow fail more and more over time. All her blood lines are at severe failure levels, and we're about out of time. We are now having to look at doing a bone marrow transplant in the near future. None of her four younger siblings are a bone marrow match for her, but they are all healthy. We just sent off a test, today actually, to get her updated HLA typing done (bone marrow typing), and we should know later this week if she has a bone marrow match out there. We don't have a date set for the transplant yet. But, when we do go, I'll have to take her out of state to one of three hospitals in the USA that specialize in her type of transplant.

 

A Humble Family

Emma and her siblings. 

 

 

Emma is the oldest of 5 sibs.  Parenting that number of children is a feat in itself, but adding the doctor's appointments, hospitalizations, medical tests and stress associated with caring for an ill child is dizzying.  Yet, Emma's family is humble and unassuming.  I had no idea what they were battling.

 

I became acquainted with Teresa (Emma's mom), as she was selected to create the cover for the upcoming book "Time-In Not Time-Out" co-authored by Dr. Lynne Kenney, Ava Parnass and myself.  Dr.  Kenney had seen Teresa's work and was enamored by it.  She shared some of her past work with Ava and myself and we were sold.  We knew that Teresa would create our book cover.

 

Teresa and I exchanged several emails, and in the process of digging deeper, and looking into her facebook and website to get a better feel for the direction of our bookcover, I uncovered the reality of Teresa and her husband Tyler's life.  My heart stood still for a minute.  Because I had this image of this lady, a busy mom of five, who was sending me responsive and timely emails and bending over backwards to please us for the cover (with her 5 kids underfoot)...and never once did she mention she was facing such a tough medical crisis with one of her kiddos.  I had no idea that hiring her to do this cover meant more money in the bank for her daughter's transplant.  I had no idea that this mom who was jovial and quipped back and forth about peach cobbler, her hubby's birthday and engaged in other lighthearted banter with me was working to buy more time for her baby girl. 

 

Emma's Fight: Won't You Help?

 

As I dug deeper into Teresa's work, I found a full set of her graphics and printables that were available in a bundle for $10.00.  Teresa calls it "Buy the Store".  I know.  Over $100.00 worth of digital designs for a fraction of the cost.  Unreal.  It was this discovery that led me to finding out about Emma's condition and how Teresa was hoping to offset the cost of medical care through the sales of her graphics.

 

 

You can buy the bundle on Teresa's etsy shop here.

 

You can also see her blog here. She also has a freebie available until Friday, so go soon.  But, be sure to grab her $10.00 bundle, to help cover medical costs for sweet Emma.

The family has set up a website and a Facebook page for friends and family to follow.  Please follow along to offer the family support and prayers. 

 

Here's an excerpt from the Facebook page:

 

But she (Emma) knows the reality of a transplant, knows that it's a very difficult process, and knows that... she can die from it. She stopped talking for a second and then said, "I might die from it." I told her that was true. She said, "I really don't want to die from it, but if I do, I know I'll get to see Jesus and be with Dianna." (Dianna is a little girl with FA that she met during her transplant, who ended up dying.) I told her that was true and then I listed off some more people she'll be able to see, like my grandpa and my sister. She thought that sounded very exciting.

She said, "You'll miss me a lot if I die, won't you. I bet you'll all cry a lot." Then she smiled. I told her I would miss her more than anything, and I told her that we would all cry for years over her. She said she would miss us too. 

Faith, Love, Hope

The family website offers an intimate view into the life of a beautiful young family, facing heartbreaking decisions.  Even bigger than the struggles, is the FAITH, LOVE AND HOPE that abounds on these pages. 

Teresa comments in one of her posts that she doesn't know where Emma gets her courage and faith.  I do.  Her parents are AMAZING!

Join the Fight

Maybe you don't do digital scrapbooking, or use digital art in graphic designs.  That's okay, perhaps you know someone who does.  Maybe you can share the link to Teresa's site, where the graphics are available, with a friend who scrapbooks.  I'm sure you can donate money to Emma's Fight, too.

You can tweet, facebook or pin her story.  Won't you join Emma's Fight?


Thanks for having a BIG heart for a LITTLE girl,