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.


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  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.