A Mama on a Mission to Find a Cure for Her Daughters

- Kristiana Tarnuzzer

 

THE SUN…

…was setting over the crystal blue Pacific Ocean, guests were overflowing at The Jonathan Club Santa Monica entrance, and the music and cocktails were already flowing on the evening of October 19.  While the beach is always a beautiful backdrop for any occasion, the sun felt a little bit warmer, the crowd a little more engaged, and the ocean seemed to sparkle just a bit brighter on this particular evening.  No doubt it was the reason behind the gathering - two endearing girls and their devoted parents raising awareness and bringing together a community for a family fun filled evening of BINGO to Find a Cure for Batten Disease.  

Both daughters of Kristen and Gordon Gray, Charlotte and Gwenyth, have been diagnosed with Batten Disease, a rare neurological disorder, with 3 stages of symptom onset, infantile, late infantile and juvenile.  The disease creates cell death in the brain resulting in the loss of speech, mobility, feeding, eye sight, and eventually, death.  When the couple learned the news of their daughters’ diagnosis in 2015, it was a race against time.  They began a social media campaign to raise awareness and funds quickly.  The outpouring of love and support from family and friends that followed was incredible - everyone joined together to fight this battle not just for Charlotte and Gwenyth, but all children impacted by this disease.  Thus, The Charlotte and Gwenyth Gray Foundation to Cure Batten was formed.  Currently, there is no cure for Batten Disease but the foundation and another pharmaceutical company have made significant headway by reaching a clinical trial for Batten CLN6 at Nationwide Children’s Hospital, funding a Building Blocks scholarship fund and giving support to families with children who have Batten CLN6 to help ease the high cost for supportive therapies like physical, speech and occupational therapy. 

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KriSTEN AND I…

…met at our children’s TK orientation in August – Gwenyth and Luka would be classmates, and fast friends, that coming fall.  Each time I met Kristen, it became more and more obvious how genuine and down to earth she was, not to mention a truly remarkable mom.  Gwenyth?  Well let’s just say, that girl can light up a room…and her affectionate hugs will leave anyone melting.  It was no surprise to see the hundreds of guests who came to the event this evening clearly shared this sentiment for the family.  If love and support alone could cure a disease, Batten Disease would be a thing of the past by the end of that evening.  Here are a few words from Kristen herself:

TCB: As a mom, I always find it can be a struggle speaking to my kids about topics that are hard or not easily understood.  How do you communicate with your girls about the disease?  

KG: I started talking to Charlotte early about her body, how it was changing and how we learn to adapt to those changes.  How much she really understood, I’m not sure; however, I know she is very intuitive and that from a very early age, she could tell something was not right.  Charlotte was once swimming, doing gymnastics and riding her scooter -- all of that was taken away in a year’s time.  She was diagnosed at 4 years old and by 5 years old, she had lost most of her speech, her ability to walk independently and her ability to feed herself.  With Gwen, watching her sister lose skill, it has just become part of our everyday life and we celebrate her achievements, big and small.  We talk about how her body works differently and how her brain forgot certain things but that we are all working hard to regain her strength and abilities.  I think it’s important for all families to communicate the differences each child has and really enforce empathy for those children that are disabled.  

 
 

TCB:

…I've seen you firsthand be an extremely attentive mom, while balancing work and a personal life, and you do it all with such grace.  What have been some of your driving forces, supporters, reminders, and/or motivations each day?  

KG: My girls and family are my driving force.  My family and friends have been my loyal supporters; without them, I am not sure I would have made it through such a challenging time.  My daily reminder is that there will be good days and bad days and I need to cherish every second that I have on this earth and every second with my children.  I experience more joy in the simple things and practice patience every day.  I have definitely had to alter my reality for what I thought my life would be as a parent/mom, but I am so blessed to have Charlotte and Gwenyth pick me to be their mom!  

We all know a mother will stop at nothing when it comes to caring for her children.  This mama is a fighter and ain’t no one gonna stop her in continuing to find a cure for Batten Disease.  To help support the lovable Gray girls, and to join Kristen and Gordon in their continued efforts to find a cure for Batten Disease, please visit https://www.curebatten.org.  

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