Keller TX Family | Leukodystophy Awareness

I have had this session I wanted to blog about for some time.  I have been hesitant, because I wanted to respect the family and their privacy.

I met Jenna through my mother, they worked together for several years.  When I was pregnant with Rivers, Jenna was pregnant with Jackson, they are about 6 months apart.  Maybe this is why their story hit me so hard.  Maybe its because as a new mother myself I could not for the life of me imagine what they were going through.  Their story is heartbreaking, and I know you will agree.

I first met Jackson as a newborn.  He was so precious!  I was stoked to work with them, because I just sat through a session with the amazingly talented Amanda Dorris Photography and I was so ready.  They were big in to sports so I knew I had to have all the appropriate props.  I loved that session, this one has to be my favorite.

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A few months ago, I learned Jackson had been diagnosed with Leukodystrophy, a form known as Krabbe.  Ever heard of it?  Me either.  So I did what anyone would do, and googled it. Its a degenerative disorder that affects the nervous system.  Its so incredibly rare, only 1 in 100,000 people.  Only 3 other people in the ENTIRE state of Texas have this disease, and none of their doctors had seen or treated a case.  They are currently seeking treatment at the Children’s Hospital of Pittsburg, where a doctor there has actually seen and treated more than 100 cases of this disease.  The average life span of a child diagnosed with Krabbe is 24 months.  The more I read, the more tears filled my eyes.  Its so heartbreaking, I literally cannot imagine.  

Before the diagnosis we had scheduled a session for November to make sure they had those updated photos for Christmas cards.  It was important now more than ever that we press on.  I was so glad, in spite of what they might be thinking, or feeling they wanted to do the session.  I was not prepared for how emotional this would be.  I am so invested in my clients, they become my friends, and I share in the joy and the heartache.  I have so much empathy for this whole family, more than I knew possible.

I watched these amazing parents with their son, they are so strong and such incredible people.  I captured each moment as it passed, and to date, is one of my favorite sessions.  I look at these images and I feel very deep emotions.  I only hope I did this family justice and gave them something to treasure forever.

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If you read any part of this story and have to help, let me tell you how.  If you are local, friend and family are hosting a fun run Jog for Jackson on March 1, for more information visit www.jogforjackson.com  You can also help this family by making a donation at the link above as well.  Please keep this family in your thoughts and prayers.

Lindsey