I recently shared my story with the national talk show, The Daily Blast Live.
I have loved the show for a very long time and actually followed two of their hosts, Sam Schacher and Jeff Schroder on Instagram forever. I would recognize their families on the street and probably ask about their latest pumpkin patch adventure with their kids!
One of the show’s producers heard about my story and called me on a very rough day. During our long chat, I explained to her that Maxwell was diagnosed with a rare neurological disease, there was no treatment, and we were creating the therapy to cure the disease. I knew from our introduction that her young daughter had been affected by cancer, and as our conversation drew to a close, I could feel personal conviction in our path. I was so inspired by her strength and compassion, I burst into tears and asked when things started to feel better for her. Then we talked for another hour.
The crew from the Daily Blast Live accompanied Maxwell and I on an inpatient hospital stay for testing over the summer. Maxwell was hysterical as two technicians and myself held him down while a million electrodes were glued to his head for an EEG. I kept singing The Farmer in the Dell to calm him down, but after 20 minutes of screaming, he couldn’t calm down. Finally, he fell asleep out of pure exhaustion and I was able to be interviewed.
They were also with me when I received the results that his disease is progressing, reiterating the importance that he receive gene therapy. The news certainly wasn’t a surprise, but it’s never less devastating to actually hear the words.
Daily Blast Live also came to our house to experience the day, and we had so much fun during their visit. Sam danced around to Do Your Ears Hang Low along with the family–her daughter even had the same rapping duck that Maxwell and Riley both adore. I was live in the studio when our segment aired, sitting on a panel with the hosts. It was an amazing opportunity to get our story out there, and to raise awareness about SLC6A1.
While walking out to my car, I saw my Facebook messenger ring.
I had never received a phone call via Facebook messenger, so I wasn’t sure what to expect when I picked up. A woman, struggling with English, asked if I was Amber. She was translating for a woman in Romania who had just seen the episode on YouTube after her daughter was diagnosed with SLC6A1, and they’d thought they were the alone. I could hear the mother crying in the background while her friend gently asked if I could help them, too. The language barrier didn’t matter–I could hear the vulnerability in the mother’s voice, and the relief when she knew she had found help.
The power of media and storytelling has given Maxwell a voice where he would otherwise not have one.
It is wondrous to see his story spread across the globe and be able to help more children receive a gene therapy treatment. There are few things as isolating as learning that your child is affected by a rare disease. It plunges your world into darkness, leaving you fighting for every small light you can find to chase away the shadows. I am so grateful that in sharing our story, I’ve been able to help others find the lights they need. Together, we will triumph over SLC6A1 so that no one else has to find themselves in that same darkness.
If you would like to see the Daily Blast Clip, please watch here: