Loveable L1 CAM Syndrome Boys

The number one thing I wanted to find online when I learned Noah would have L1 Syndrome (also known as x-linked hydrocephalus), was other families who were affected! I will compile stories of other x-linked hydrocephalus families and hopefully this will help you either understand what our L1 families face, or find hope in your new diagnosis.

 

X-Linked Hydrocephalus Families

 

Meet Noeli

click on his photo for his story

tracy felix

 

These Brothers: Braylon and Carson

click on their photo to visit their story

carson and braylon l1 instagram

4 Comments

  1. Sarah Corsaro

    It took me several times searching for others that have a son like mine. We knew Max had hydrocephalus but we were waiting on the genetic testing to come back. Honestly, my gut was telling me his hydro wasn’t gonna be this. My gut was wrong. We spent an hour and half with the genetics Doc. My blood was shipped off to be tested. I am desperate to connect with others going thru this. I love my son unconditionally, but I am struggling with all this and feel overwhelmed. I would love to connect with others and see however is coping. I know each child is different but it helps to see how other are doing. Max came 8 weeks early and is 2 months now. He is doing so well so its hard to believe he has this genetic mutation. Anyway that is little bit about my son. Thank you for sharing your journey and creating this website.

    Reply
    1. freshlymessy (Post author)

      Sarah! I am so excited that you reached out to me! I have contacted you on Facebook (I hope!) with a friend request and private message. I would absolutely love to chat with you! I am so sorry for your diagnosis; I assume you knew you were a carrier since you were hoping this wasn’t the case? Please, if I did not get ahold of the correct Sarah on Facebook, please let me know so I may reach out to you in another way!

      Reply
  2. Sarah Corsaro

    It took me several times searching for others that have a son like mine. We knew Max had hydrocephalus but we were waiting on the genetic testing to come back. Honestly, my gut was telling me his hydro wasn’t gonna be this. My gut was wrong. We spent an hour and half with the genetics Doc. My blood was shipped off to be tested. I am desperate to connect with others going thru this. I love my son unconditionally, but I am struggling with all this and feel overwhelmed. I would love to connect with others and see however is coping. I know each child is different but it helps to see how other are doing. Max came 8 weeks early and is 2 months now. He is doing so well so its hard to believe he has this genetic mutation. Anyway that is little bit about my son. Thank you for sharing your journey and creating this website.

    Reply
    1. freshlymessy (Post author)

      Sarah! I am so excited that you reached out to me! I have contacted you on Facebook (I hope!) with a friend request and private message. I would absolutely love to chat with you! I am so sorry for your diagnosis; I assume you knew you were a carrier since you were hoping this wasn’t the case? Please, if I did not get ahold of the correct Sarah on Facebook, please let me know so I may reach out to you in another way!

      Reply

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