X-linked Hydrocephlaus

X-linked hydrocephalus (L1 syndrome)

**September is Hydrocephalus Awareness month**

Hydrocephalus is referred to as water on the brain.  The water is called cerebrospinal fluid (CSF), a clear liquid that is produced in the 4 ventricles (cavities) of the brain.

My boys were diagnosed with Hydrocephalus at birth.

Congenital hydrocephalus accounts for approximately 50% of all forms of hydrocephalus.

 

X-linked hydrocephalus (L1 syndrome) is the most common genetic cause of congenital hydrocephalus, accounting for about 10% of congenital hydrocephalus in boys, and is a common cause of X-linked spastic paraplegia (SPG1) in boys.

L1 syndrome is caused by mutations in the neural cell adhesion molecule L1 (L1CAM) gene at Xq28 and comprises a broad clinical spectrum of disorders, including X-linked hydrocephalus (XLH), MASA syndrome (Mental retardation, Adducted thumbs, Shuffling gait, Aphasia), spastic paraplegia type I (SPG1)

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http://www.hydroassoc.org/

 

 

About Tonya Aycock

Hi, my name is Tonya. I am a wife and mom of two children (Brandon & Brently). I am a born again Christian. My passion is raising awareness for my boys and making sure they have the very best that I can give them. I love singing. I was in a Southern Gospel Group for about three years, and I enjoyed every minute of it. I think most of all, besides the singing, I enjoyed meeting people and sharing my testimony of how God has brought me through. I love playing guitar and hearing my sweet husband play music and sing to our boys. I enjoy making crafts and designing floral arrangements. I love camping. I am always up for a new adventure! I enjoy working in my yard and anything outdoors. I love my home. I like taking pictures of God’s beautiful creation. The hummingbirds, Canadian geese, turtles, and deer are beautiful! I never dreamed that I would enjoy the country as much as I do. I have always been a city kind of girl, so let’s just say I am adjusting to the country's life well. Haha! Another exciting thing about my husband and myself is that we have always wanted to open a restaurant. Maybe one day… who knows…. I created this blog to share the in’s and out’s of daily living of being a mom of children with special needs, how life can change in an instant, losing a child, finding real friendships that live the same kind of life that I do that truly understand, and much more. I love to talk about my faith as I learn how to cope through life (good and bad) together. I want to always put complete control in my Lord and Savior, Jesus Christ, because without Him, I am nothing. My prayer is that I can somehow help someone by sharing my story. It is most definitely easier said than done, and I fail daily, but striving to make things work in a world that doesn’t understand is just one of the reasons I am here, writing and sharing my story and trying to be the best me as I can and being the best mother that my children will love and respect and see me survive and thrive as I watch them surviving two thriving in life. But, most of all that they see Jesus in me. “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 God has a plan for my life and my family as well and for who is reading this right now. I can only hope and pray that I am doing what He has called me to do…… Being a wife, mom, advocate of special needs, a friend, encourager, but most of all… a servant of His. This has been and continues to be a unique life raising my SuPeR HeRo children dancing in the rain of the beautiful, messy life!
This entry was posted in Disability, L1syndrome, Special Needs, L1Syndrome and tagged , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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