AJ’s journey with LCC

26/08/2026

First day of school !! ✏️✂️❤️🍎📚

25/08/2026

Lairos AFO socks are here !! AJ loves all the colors. His favorite are the turtles and football ones. Being part of a community we’re allot of LCC patients wear AFO it’s nice to have a company that brings a little fun into wearing AFOs!

23/08/2026

1 year ago AJ got diagnosed with LCC known as Labrune Syndrome. leukoencephalopathy with calcifications and cysts (LCC), is an ultra-rare genetic neurological disorder. It is defined by a distinct radiological triad on brain scans: damage to the brain's white matter (leukoencephalopathy), abnormal calcium deposits (calcifications), and fluid-filled cavities (cysts).

But this wasn’t the beginning. January 2024 we went for a MRI at Hasbro Children’s hospital and during that MRI we found the Cysts and calcifications. We were admitted into the hospital because the doctor had no idea what this was. The next day we had a spinal tap done and a CT scan to find the calcifications. During this time we were told we needed to do more genetic testing to see if there is a mutation in the SNORD118 gene. We did this. May 2024 Hasbro told us AJ does not have Labrune Syndrome. They aren’t sure what he has. Fast Forward May 2025. Hasbro told us they did not do the right testing and we needed to be tested again. I was furious. How can you go a whole year without letting us know they found new testing for the SNORD118 gene. This is a very serious condition and Hasbro genetics department could’ve cared less. When we finally got the results of this test. They could not diagnose him because they don’t have enough information. This whole time I have been telling everyone at Hasbro about the LCC foundation and Dr. Fraser down in DC who researches in specializes in LCC. No one wanted to listen or hear me. Boston finally diagnosed AJ and we finally were able to go see the best down in DC. 

During this year we have learned ALLOT ! Met incredible people. Drs who care so much about our small community. Our support system who cares soo much about AJ and want to see him live his best life ! We are forever grateful for everyone. This coming year we have some exciting things happening with the LCC foundation and we can not wait to share !

Thank you everyone who has followed AJ’s journey with LCC. You guys are the reason LCC is finally getting some attention. Keep sharing Ajs story and all LCC stories so one day we can see a cure !!!

19/08/2026

AJ got his new AFO ! (ankle-foot orthosis) he loves it and is excited to order some cool looking socks!

07/08/2026

I’m taking dads drivers seat and his LCC foundation hat with mom’s sunglasses!

02/08/2026

Some pictures from the LCC foundation first global conference!! What an amazing experience. Meeting with doctors and families who are impacted by LCC. We have forever made friendships from this and can not wait for our next conference!! 💜💙

26/07/2026

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30/05/2026

AJ is still looking for sponsors!!

Let us know if you would like to sponsor AJ !

Join us for our Inaugural Global LCC Conference!

27/05/2026

‼️TRIGGER WARNING ‼️ Active seizure in video ! ‼️

We are 1 week away from AJ’s first MRI in Washington DC. Needless to say we are very nervous. We haven’t had a MRI in 10 months and getting to learn how a new hospital works gives us anxiety. But he is in the best place with a team knowing how to take care of AJ!

Let’s talk about AJ’s first seizure. He was 2 months old. Right around Easter is when AJ had his first seizure. A left arm tick. I sent a video to our pediatrician and they told us to held to Hasbro ASAP. That’s when AJ was diagnosed with epilepsy. He had way too many seizures in a short period of time. During this we were admitted into the hospital and discharge the next day. I believe we were put on Keppra. The next morning Anderson had another seizure and we were admitted into PICU. The were giving Anderson  vitamin B6 through IV. That didn’t help. He had too many seizure to count that day. Towards the end of the day they gave him phenobarbital which completely stopped to seizures. We were so grateful for that ! We also had a MRI a couple days later. The finding of that MRI were “small dried blood spots.” that’s what the doctors told us. Knowing what I know now me personally I don’t believe those were “dried blood spots” I believe they were the start of cyst in Anderson brain. 🧠