Sunday, November 19, 2017

A #FightingForMaya Update

There we sat.  It had been at least seven years.  He had asked for the meeting and said that I could move it if I was too busy. 

I didn't. 

We exchanged pleasantries...

     "What division are you in?" 

     "Remember the old days?"

     "What are you working on?"

We only had thirty minutes and I couldn't figure out why he had asked for the meeting.  I couldn't figure out what obscure project required my assistance.

Then he said it... "His daughter had been recently diagnosed with a rare disease."  It hit me like a bomb... why hadn't I seen the signs.  Would I ever see the signs?

I got up, and against his objections, I asked my assistant to clear my calendar.

His wife had read about Maya and insisted that he come and speak with me. 

I got it. 

I remember the fear, the burden... How could I (a successful adult) ask for help?

I did my best to channel those who listened to Maya's story... those who supported and helped when Maya was first diagnosed and I listened and did my best to share what we had learned during our own journey.

It wasn't the first time and it won't be the last. 

That is my promise to Maya.


Our family has been very quiet for the last couple of months.  Sort of in hibernation.  Really just trying process the last year and to re-establish who we are as a unit.

As those Facebook memories come across our feeds, reminding us of all that we as a family endured, only during those moments, do we fully comprehend what it took to get Maya access to treatment, traveling thousands of mile, every two weeks, to a far off city. 

I recently took a look at our calendar from October 2016, and I remembered printing a copy for each of the boys and telling them that "Either mommy or I would be back for birthdays, soccer games and other important events, but grandma and grandpa would be with them during the week."

 I remember thinking that if we made it through this journey, that the boys would be stronger and this push (to save their sister's life), by their family and their community, would forever provide them with the strength to accomplish anything.  IT HAS!!!

There is a lot that we as a family have to do to repair the sacrifice of the past year, but we're going to be okay.  We are going to be way more than okay!


A couple of Fridays ago, I sat across from Maya's doctor and asked if we could review Maya's old videos.  Those videos of her walking and talking when we first started at CHOC.  I'd recently been faced with a bunch of questions,

"How is Maya?"

"Is it working?"

To his credit, Maya's doctor reminded me of that month when Maya came off of treatment, due to an infection. 

"Remember how she stooped as she walked?" 

"Remember how much you had to support her as she walked?"

"You know the science.... every infusion is a success... every day without regression is a really good day."


How can you help?

When we started, Maya was the 8th reported case with this form of Batten Disease.  Today, I know of well over 30 people who have received this specific diagnosis.  Some estimates say that the number is well over 100.  We have come a long way, but there is still more to do.

1.        If you are able, please make a donation to the research project at Texas Children's Hospital.  This program is studying Maya's specific form of this disorder (as well as the classic form).  The moonshot of this project is a less invasive, less risky treatment for those who are dealing with this disorder.  To date, we have raised $120,000 of the necessary $200,000 for this four year research project.

2.       At least once, between today and the end of the year, put on your #FightingForMaya shirt, take a selfie and share Maya's story.   This one small act could make all of the difference for one family... it could be the reason for my next meeting.

Happy Holidays and thank you for your continued Love and Support.



  1. Awesome. You all are amazing and I love you very much. It is one step at a time. #fighting for Maya.

  2. Thank you for sharing and continuing to share Maya’s story and for sharing your family’s story and sacrifice. I will never forget the first day I met Maya on the kindergarten playground when Ezra and Shayla were kinders back in 2010. It was the beginning of the school year and we were new to the SDCCS Community and her smile blazed in my brain as one I will never forget.Thank you for sharing her/your story. It is important.