Together we fight for Liam

Message from Lex …. I just want to start by saying all the love and support and outreach we have gotten from family and friends has been amazing. Liam is truly loved by so many people and that makes my heart so happy. We have so much support and wouldn’t be able to do this without all the support from everyone.

With that being said, on 2/13/22 we got Liam’s official diagnosis after being admitted for failure to thrive, because little man was loosing weight and not gaining like he should. I’ve been trying to figure out the right words, and i probably never will but Liam has Hypomyelinating Leukodystrophy - type 3. A very very very rare genetic disorder that affects the brain. Brett and i both carry a good copy and a bad copy of the gene AIMP1 and Liam unfortunately inherited both bad genes from us. There unfortunately is not much info on this disorder because it is so rare so we will learn from Liam as time goes on.

In regards to Liam’s future, it is very unknown. We will follow behind him and support him in every way possible. All we know are things that he MIGHT not be able to do. We know he is very high risk for developing seizures, however the doctors were very happy that we have not seen any yet. We know he currently has issues swallowing, which is why he eats from an NG tube, which he is doing so good on. We know that may never get better but we hope and pray that it does. We know he has Microcephaly, which just means his head is a little smaller that normal. We were just given a list of things he may not be able to do like walk, talk, eat by mouth, sit up, and he will be significantly delayed. Liam will follow his own growth/development chart. We are aware of the worst case scenario but praying for the best.

Something we do know is that his diagnosis does not define him. He is still our perfect little man put on this earth to serve a purpose we may never understand. We know he is loved by so many people, who are ready to move mountains for him as needed. We will tackle any challenge thrown at him. We love him no matter what, he is perfect. We will take it day by day and right now he is doing amazing. He is tolerating his feeds amazingly and continuing to gain weight❣️

So many people have reached out, asking how they can help. Pray. Just pray that he defies the odds, or for some type of clinical trial or gene therapy, or any type of cure/treatment because right now, there is none.