Andrew's Allies

04/29/2026

🧬Did you know?

CDD is not a degenerative disease. Researchers explain that neurons do not die over the years in CDD — they are still there, but they are not functioning as they would with a healthy CDKL5 gene.

That's one reason gene therapy research continues to be such an important area of hope for our community. Scientists say the door remains open, at least theoretically, for intervention beyond early childhood — though this still needs to be studied in people with CDD.

At the same time, researchers are clear: gene therapy has not yet been tested in people with CDD, and the first ELJ-101 trial is expected to focus on safety first. Hope and honesty can exist together, and both matter to families.

IFCR continues to support the research and natural history work that make future CDD trials possible. ✨

02/03/2026

Andrew gets to come home today! His father is taking a nap before they load and go. Monster is more than ready to get out of there. And there is a nice break in the weather and ice box effect, so it should be a safe drive home for him.

01/31/2026

Andrew got to Cincinnati around 7 this morning. Of course they ran all the tests again. Chest imaging was clear at 830 but they started to see stuff around 230 this afternoon. He had to have Ativan this afternoon because he started having lots of activity and twitches, so they gave it before the seizures hit. He’s resting quietly tonight. The team will be in in the morning so we will know more tomorrow.

01/30/2026

Monster is going to Cincinnati. They can’t fly because the cold is to dangerous. So, he is waiting for a ambulance.

01/30/2026

Yall, say an extra little prayer for Andrew. His father took him to er because his O2 levels dropped , not unusual but nebs usually take care of it. They tested everything, like always. The Flu A test came back positive. He isnt critical, but can definitely use all the extra support he can get! I’ll keep everyone posted!

01/23/2026

Happy birthday to my sweet boy. How is it possible that your are ten years old already!!??

11/17/2025

Here are a few pictures from our week at universal studios and give kids the world. What an amazing trip!

11/12/2025

There weren’t many pictures to post yesterday. He slept most of the day. Today was a different story. He laughed at Chris getting wet, LOVED going on the Cat a the Hat ride, and talked all through the One fish Two fish, red fish , blue fish ride. Universal always goes above and beyond for special needs!

11/08/2025

Tomorrow we are off on another grand adventure! Our family looks different from last time, but as we all k ow, family isn’t always blood! 8 days in Florida, or counting the two travel days. Universal studios, a day at Give Kids the World, hopefully a day at the beach, and a visit with grandma and aunt Sherry!

09/23/2025

09/17/2025

I am so sorry for not updating!!! Andrew was discharged and went home Saturday. They put him on his sick day plan to control the seizures while he was ill. He is back on the right track now!!

09/10/2025

Well, Andrew is going to Cincinnati again. He has a pneumonia, but not due to aspiration this time. Not sure where he would have been exposed to anything, but here we are. I’ll keep y’all posted as his father keeps me updated.