Andrew's Allies

Andrew's Allies this is to bring awareness to CDKL5 and Andrew's journey. Andrew is days shy of turning two. He is unable to sit, hold a bottle, or even talk.

He has something that is called CDKL5. It is a genetic mutation on the X chromosome. It effects around 1200-1500 people internationally, to date, and only around 200 boys. It includes Seizures, often uncontrolled and more than one type, low muscle tone, hyper flexibility, inability to communicate, feeding problems (Most kiddos have gtubes), a life bound to wheelchairs. A lifetime of therapies and hospital stays. This page is for people to follow our journey with this awful genetic mutation and to promote awareness of CDKL5. You can always learn mor3e at www.cdkl5.com If you have questions, feel free to ask me! I ill attempt to answer them to the best of my ability.

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.

So I started this piece when Andrew was 2. The center starfish is representative of his disorder. The starfish is a sort...
08/28/2025

So I started this piece when Andrew was 2. The center starfish is representative of his disorder. The starfish is a sort of mascot, and I added the purple ribbon for epilepsy awareness. The smaller 9’stars are for each birthday. I wanted to add a star a year, one for every birthday. When we moved to West Virginia I didn’t know a good artist. Well, I found an amazing artist! We did a cover up of the old starfish, they weren’t what I envisioned, and added the other seven stars. What pain this tat brings is nothing compared to all his seizures and other struggles in his little life.

It is spontaneous, as science has shown since Andrew’s diagnosis, not because I had a “deformed egg” as some have said.
08/20/2025

It is spontaneous, as science has shown since Andrew’s diagnosis, not because I had a “deformed egg” as some have said.

08/20/2025

Our mastery!

We went to The Great Wolf Lodge! I didn’t get a lot of pictures, but Andrew had a great time!! We met Violet Wolf! Andre...
08/20/2025

We went to The Great Wolf Lodge! I didn’t get a lot of pictures, but Andrew had a great time!! We met Violet Wolf! Andrew and I spent the entirety of the afternoon on a magic quest! We became master magis. By the time we could battle the Red Dragon, we were tired and it was time to come home. But we will battle him next time we go!!

An overnight adventure is on the horizon!!
08/18/2025

An overnight adventure is on the horizon!!

07/20/2025

Well, monster spent the majority of the day in the emergency room. Heart rate up, low oxygen, fast respirations. All the things we see with aspiration pneumonia. They heart crackles in the lower left lung, but imaging was clear, and he has a low fever. They diagnosed him with a mild virus, elevated white count, and possible pneumonia and sent him home with antibiotics. Follow up with his doctor this week and recheck the pneumonia. They did consult with Cincinatti too.

Andrew lost two more CDKL5 sisters this week. Nikisha and Kylee. CDD is a terrible disorder that takes to many of our ba...
04/22/2025

Andrew lost two more CDKL5 sisters this week. Nikisha and Kylee. CDD is a terrible disorder that takes to many of our babies far to soon. Fly free and run wild girls!

04/12/2025

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Summersville, WV
26651

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