Print this page

News

Comfort Bears for Liver Transplant Kids


Small bears for small children fighting big battles


Jenna and Jayda are sisters whom many people already know too well.  The past 18 months have by far been harder than what I would have ever envisaged, even though we knew the girls had ‘something’ brewing from the time Jenna was two, and Jayda was born.  Unlike most liver transplant patients, the girls disease has not been cured.  How do you fight when you don’t even know what it is you are fighting?  We know that our journey is still going and although we are unaware of what next week may bring I like to think our story is a story of learning, strength, life, kindness and hope.  I also believe that these words are what help to pull us through the more challenging times. 

Children teach us many things.  Seriously sick children teach us a whole lot more. You learn to make the most of everyday moments. 

The learnings I have had is by far more than what I would have thought possible.  We have had many dark moments, and in those darkest moments I have learnt what it is that we draw on. 

For us its memories, its time spent together, laughing about crazy little things that we have done, its knowing our girls, and what they love. What they want to return to, who they want to be, what music makes them smile, what games they want to play, and how important these moments are. Often these are everyday moments that many of us, myself included can take for granted. We use this to ignite love and spark in them, and tell them to never give up.  We remind them of these moments whenever they may need strength, but they also give us, as parents, something to hold onto - a goal to return to, a drive to keep going. 

Nowadays we live life quite differently. We celebrate different things from what we used to. 

We celebrate solid poo in our household, and a feed finished without a vomit. 

We celebrate a line being removed, a blood test free week, and actually getting to school for the day. 

The girls don’t feel sorry for themselves, and partly because although we feel their pain, and acknowledge everything they go through, this doesn't make them who they are. This is our path, and although it has been different to what I ever expected, the people and experiences we have met and had along the way, we take with us. I believe it has helped us become stronger as a family, and as individuals. We have not only accepted how our life is, we have embraced it, we own who we are and what our everyday is. 

And through this we want to help support and give back, wherever we can. 

Our family has been shown so much kindness and generosity over the past years that we now want to share what we have experienced through our jouney with others by donating this bear.

Jenna has spoken personally to children who are heading into a transplant, even spoken to some parents of newborns.  She provides comfort wherever she can, but on top of this we have worked together and designed a specially made ‘Jenna and Jayda Liver Bear’.  

The bear is a beautifully designed, natural bear that has been made with its very own liver scar.  We are currently donating a bear to every child at RCH Melbourne who has a Liver Transplant, and have already donated 10 bears.  The response has been overwhelming, with some children not letting go of them.  It’s our way to help ‘bear the strain’.  

Our goal for the bear is to find funding to support the ‘Jenna and Jayda Liver Bear’  so we can do something small for every child who has a liver transplant across Australia, and then the world.

‘Small bears for small children fighting big battles.’

 

 

To help achieve our goal, I have created a photographic journey called 'Undiagnosed Through a Mother's Eye.

Undiagnosed Through a Mother's Eye is my photographic journey; it is a constructed dreamlike reality that weaves together my personal experience of having ill children, the emotional turmoil felt by both myself and my children, and the experiences of not knowing what is threatening my children’s lives. The series reveals the complexity that undiagnosable, and life threatening diseases present to not just our family, but all families from one day to the next, as well as the challenges of the unknown and unexplained. 

To understand, through my eyes, what it looks like to watch my children fight for existence.

The book includes both fine art and photojournalistic images, and is a therapeutic journey designed for anyone who has been touched by a seriously ill child.  The images are created beautifully in photographic dreamscapes, drawn from not only moments of hope, but also from moments of darkness.

?270mm x 230mm and 44 pages long, printed on art paper.  The photographic book is beautifully presented with perfect binding and contains never seen before images of Jenna and Jayda's journey, Volume I.

Proceeds from every book sold will go to funding Jenna and Jayda's Liver Bear for seriously ill children. 

Copies of this book are available from Inverleigh General Store and Bakehouse and on my website:  http://rconciphotography.com/shop.

by Rebecca Conci