Lissencephaly

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Clinical definition:  Lissencephaly, literally meaning smooth brain, is a rare genetic brain malformation.  Kids with Lissencephaly usually have significant developmental delays, seizure disorders, spasticity (stiff muscles), hypotonia (floppy muscles), difficulty swallowing, aspiration, and respiratory issues.  Although there is a wide spectrum and some children have a near normal development level, most cases are moderate to severe.  Life expectancy varies, depending on who you talk to, used to be 3 months to about two years.  However, with advancements in seizure control medicines and medical care the age has increased from about 8-20 years.  There have been some cases where people with Lissencephaly live to their fourth and fifth decade.  The most common complications are seizures, aspiration, choking, and respiratory infections.

Pretty bleak, huh?  We’ve learned not to Google anything because all you’ll read is information that gives a very grim outlook with next to zero hope.  Obviously, when we got this diagnosis we were completely devastated.  It was easily the worst day of our lives.  We were told that Paige has a severe form and to not really expect much from her physically and mentally.  That’s an awfully dark prediction that we just refuse to believe.  Kick in the gut?  Try being ran over by a bus.

What it means to us:  We believe that Paige is a beautiful little girl that won’t be limited by a diagnosis.  We believe that every time she does something that a doctor told us would never happen will be the happiest days of our lives.  We know that she was given to us for a reason and truly, truly believe that she will only enrich our lives and everyone around her.  We believe that she has potential and we will make it our life’s work to make sure she has the happiest and most fulfilling childhood.  We believe that even though our lives are now very different, they will still be good and we will not waste energy being sad all of the time.  Bottom line:  Paige will be loved, cherished, and celebrated every day and is a huge blessing through and through!

6 comments

  1. Prayers! You never know the miracles SHE will bring to YOU and others around you. You are a testimony and a true example of God’s love and grace!

  2. Andew and Steph our heartfelt prayers go out to you both as you go thru this journey with Paige. We also had a baby with a severe genetic condition called trisomy 18 many years ago after Mike and Bryan were born They told us he wouldn’t live but a few hours after birth. Little did they know the-power of prayer and that God was in control. We decided we wouldn’t spend all our time worrying about the “unknown” . We decided to make as many memories as we could with whatever time we had. In the short time Justin lived he changed and inspired more people than I could in my lifetime. He even went camping.We were a more faithful and loving family during the time he lived. I felt closer to God in those 4 months than I ever had in my life. Paige is blessed to have been chosen to be in the wonderful Barbour family.

    “Sometimes Miracles hide and God will wrap some blessings in disguise. you may have to wait this lifetime to see the reasons with your eyes cause sometimes miracles hide”

    I know you will have good days and bad but your faith, family and friends will get you through. God will give you grace you never thought possible. It won’ t be easy but God will carry you through.
    I look forward following Paige’s progress.

  3. My 5 mo old niece (also called Sweet Pea!) was diagnosed less than 24 hrs ago and all I’ve done since is google and cry my eyes out. This is the first blog I’ve found that DOESN’T leave me in a pit of despair. Please keep writing. I will be passing this blog along to my brother and his wife. I would love to see a post on your daughter’s symptoms and your journey to the diagnosis (what were the red flags, etc). I wish your lovely family the best and will be praying for your Sweet Pea and for mine. Blessings!

    1. Thank you for commenting! My goal was to start a blog as a positive outlet because, like you, most everything I read was just so dire and left absolutely no hope.

      We found out about 2 months ago so I’ve gone (am going) through what your family is experiencing. I promise it gets better. You will have more bad news before you get more good news, it will be a whirlwind, but you WILL start to feel better. Slowly, you’ll start to accept the diagnosis and love that baby more and more.

      You’ll also be surprised about all of the people that will rally around your family. As someone told me, people will always help.

      Keep me updated on your little Sweet Pea!

      1. Good day all I also have an angel diagnosed with liss she is 8 months old diagnosed at 4 months she is so precious, she smiles chats laughs at her siter playing with her and is starting to sit she goes for theraphy every second week and baby gym belief me it helps she is starting to pul her self up to sit and starting to roll overshe is on kepra for epilepsy and is doing very well have been fit free for 2 monthsand also out of hosp for 2 months sadly we had to take her out of the chrech with all the germs spreading around but she is better of at home with her nany, i like aal other moms could not accept the fact that my baby angel was so Ill it gets beter like miemie said you have your hard days and your beter days, with paryer all is possible…..

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