04/14/2026
SAN ANTONIO AREA ~ come join us!
ROLLER. COASTER.
There was a door recently, that I did not want to walk through. I had been putting it off and when I parked in the lot of the seating & mobility clinic, I had to pause and take a few and make myself go through that door.
When Audrey was diagnosed with A-T at age 3 (almost 5 years ago), we were told that usually by age 10, kids with A-T need a wheelchair. This was truly unfathomable looking at our energetic three-year-old bouncing about the house - and a big mental hurdle for us these last few years. We have used giant wagons and large jogging strollers, given countless piggy backs, all to avoid this hurdle. But as our girl has grown, the need for an adaptive stroller/wheelchair for longer distances has arisen. So here we are – embracing it, finding the light, and making it a positive tool that helps us get where we are going in a much easier manner.
We also started monthly immune infusions for our girl this year – another thing we have avoided for as long as we could due to her extreme fear of needles. But after having three different doctors tell us that this was the best thing for Audrey’s safety, we took the leap. This path has been a bumpy one with Audrey experiencing side effects from the infusion like nausea/headaches/extreme fatigue. It’s like she is on a roller coaster of her own with her energy levels just going up and down from day to day. Some days we feel like it’s made life harder for her, but other days we see that she was exposed to an illness and did not catch it for once. It’s still early, so we will hold on and hope that the side effects subside over time.
On a very high note - this year we received news of a first ever potential treatment for A-T called NALL, that has been submitted to the FDA for approval by IntraBio – this was a monumental milestone for our A-T community! And today we got the phone call we have been waiting so long to hear - that we will be able to get access to this treatment very soon (while we wait for FDA approval)!! There is no guarantee it will help her, but God it feels good to have something we can try that may help treat her symptoms and potentially prevent some of the progression of A-T. We are so grateful to IntraBio, the A-T Children’s Project, the families that participated in the clinical trials, all the researchers involved, and the donations that have helped get us here today!
So right now we on a high point of the roller coaster ride that is A-T - praising God - and rejoicing with everyone who so faithfully jumped on this ride with us!
Looking forward to seeing everyone this weekend at Devine Acres Farm! Thanks everyone for loving our Princess Audrey so hard and for all your prayers!
