Sunday, August 9, 2015

Violet's Smile: Defying the odds of Lissencephaly

Posted by Eileen | 8/09/2015 01:31:00 PM | , , ,

Today I write about something you may have never heard of before. But for me and my husband's family, it is a word we have associated with other words like "hope," "love," "miracles," and "Violet."

This word is Lissencephaly.

What is Lissencephaly? It is a rare gene-linked brain malformation characterized by the absence of normal convolutions (folds) in the cerebral cortex. In layman's terms, it is called "smooth brain." Children with lissencephaly generally have significant developmental delays, but these vary greatly from child to child depending on the degree of brain malformation and seizure control. Life expectancy can be shortened, generally due to respiratory problems.

This is an MRI image comparing a normal brain with that of Lissencephaly.


Violet is my husband's great-niece. She was born on August 14, 2012. She was diagnosed with Lissencephaly shortly after birth. Her parents were devastated, but they did everything they can to help their daughter. The little fighter that she is, Violet proved to be a strong little girl, showing signs of improvement, defying all those senseless statistics.  

Despite her constant battle with seizures, and the long travel from their home to the hospital for medical appointments and therapies, Violet is a happy, pretty little girl. Her curly hair, expressive eyes, and radiant smile will surely melt your heart. She can sit up unassisted and is able to communicate through sign and body movement. Violet will be turning three on the 14th of this month. Another milestone achieved. Thanking the Goodness of the Lord for this blessing! 

 This is Violet. She'll be turning three on the 14th.

If you live in or around the area of Pittston, PA, we would like to invite you to attend a fundraising event for Violet, to help the family with the medical expenses. It will be on August 22, 2015. Tickets are $15/seat. 20% per ticket sold will go towards the therapy, travel and medical expenses of Violet. Below is the event banner where you can contact the organizers for tickets. 


If you would be unable to attend, or live too far away, and still want to help and show your love, please feel free to visit Violet's GoFundMe page. Any donation would be highly appreciated. You may also follow her on Facebook for updates and you may send her your birthday wishes too.


Have a happy Sunday and may your kind heart be continuously blessed.

40 comments:

  1. UnknownAugust 10, 2015 at 5:58 AM

    Such a beautiful little girl. Wish her continued progress and a life filled with lots of smiles and laughter and of course, good health.

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  2. mail4roseyAugust 10, 2015 at 10:50 AM

    That's nice that you're sharing. Go Fund Me has sure been a big help to many, hoping the same here.

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  3. Shelley Zurek -- Still Blonde after all these YEARSAugust 10, 2015 at 11:09 AM

    Violet is a brave little girl and her parents are even more so. I had never heard of this disease before.

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  4. UnknownAugust 10, 2015 at 11:21 AM

    You're right. She has a beautiful smile. I've never heard of Lissencephaly before. I pray the fundraiser is a huge success and I will be checking out the gofundme page.

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  5. Joanne DewberryAugust 10, 2015 at 3:02 PM

    What a stunning little girl! Good luck with your fundraising x

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  6. Elizabeth O.August 10, 2015 at 3:04 PM

    Violet is adorable and I wish her a happy birthday. This is the first time I heard about Lissencephaly. I'm heading over there to check the website.

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  7. NikkiAugust 10, 2015 at 4:19 PM

    it was really sad story, i never heard about this kind of illness, I'm unable to attend because i'm too far away . gonna check her websites. get well soon baby

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  8. CourtneyLynneAugust 11, 2015 at 4:03 AM

    Omg what a great cause!!!! This is a first for me even hearing about this condition!

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  9. Manu KaliaAugust 12, 2015 at 1:45 AM

    This campaign should be spread. This deserves my share!

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  10. KristenAugust 12, 2015 at 10:03 AM

    What a little sweetheart! I will keep her in my prayers!

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  11. UnknownAugust 12, 2015 at 11:33 PM

    I hadn't heard of Lissencephaly before - I think it's wonderful that you're raising awareness for your niece.

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  12. VictoriaAugust 15, 2015 at 10:53 PM

    She is so adorable. I had never heard of this condition before but I hope she enjoys lots of smiles and has a healthy life.

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  13. Yellow TennesseeAugust 16, 2015 at 8:48 AM

    I have never heard of Lissencephaly before. But I agree, Violet is a beautiful little girl. That smile is just precious.

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  14. Cynthia NicolettiAugust 16, 2015 at 1:02 PM

    A Beautiful little girl. I have never heard of Lissencephaly. It is wonderful what you are doing for her. You are not only helping raise money for her condition you are also making people aware of this disease that have never heard of it before. I wish her only the best.

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  15. Jenny @cookeatgoAugust 16, 2015 at 1:24 PM

    Your niece is absolutely beautiful! I have never heard of Lissencephaly before, the wrestling event sounds like it will be fun.

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  16. Deal Match MakerAugust 16, 2015 at 1:31 PM

    She is a beautiful. I never heard of this condition before. Hope she will get better, be a healthy and happy girl

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  17. romanescu sinzianaAugust 16, 2015 at 3:30 PM

    This post toutched me so much....the girl is such a beauty! I wish her all the best in the world! Kisses from Sinziana (me) and Alexander (my 4 years old boy)!

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  18. ourfamilyworldAugust 16, 2015 at 5:30 PM

    Aw she is a doll! I have never heard of this condition before. I hope everything turns out well for her.

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  19. UnknownAugust 16, 2015 at 5:45 PM

    What a pretty little girl! I hope your fundraising will be a success and that she gets better. Love and light to your family.

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  20. RUSSAugust 16, 2015 at 5:55 PM

    My heart goes out to Violet and I could only wish for her to get better. She is a fighter. I wish for the success of the wrestling event.

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  21. DogvillsAugust 16, 2015 at 8:22 PM

    This is the first time I heard about this condition. I hope everything turns out well for her. Clicking to check the website.

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  22. AnosaAugust 17, 2015 at 12:06 AM

    What a beauty, I hope this campaign raises a lot of funds and helps violet and family with the expenses. Thanks for sharing

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  23. Jacob from Local AdventurerAugust 17, 2015 at 1:20 AM

    She's beautiful! I didn't know about Lissencephaly before this. Thanks for sharing - I'll pass this along to our friends in the area.

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  24. Heather JonesAugust 17, 2015 at 1:45 AM

    Oh I've never heard of that before! She's a beautiful little girl! I love that GoFundMe can help her with her treatments!

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  25. debdennyAugust 17, 2015 at 2:04 AM

    Adorable youngster. Never knew about this illness.

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  26. AnonymousAugust 17, 2015 at 2:17 AM

    What a cutie! It is so important to have a great support system when something like this happens, its great to see that you all do.

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  27. Kristi Wheeler @HomesteadWishingAugust 17, 2015 at 2:25 AM

    I have not heard of this condition, but I had a daughter with A lobar holoprosencephaly. Her brain basically stopped forming while in the womb. Needless to say she is in a better place now. I am happy to see this fantastic little girl beating brain disease butt. She is adorable and happy, and it warms my heart!

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  28. DaughtersAugust 17, 2015 at 5:21 AM

    You are so correct with your opening - I have never heard of this condition before. All the best to your niece-in-law and her wonderful family, including you, supporting her. Namaste.

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  29. Jaime NicoleAugust 17, 2015 at 7:29 AM

    I have never heard of this condition. It is so good to find out all we can so that we can support the children and families fighting this diagnosis.

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  30. ShannAugust 17, 2015 at 9:34 AM

    She is absolutely adorable. I'm so happy to hear what a fighter she is and how strong she is. My thoughts and prayers are with her family. Sorry I don't live closer to attend the fundraiser.

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  31. Lauren Ivy ChiongAugust 17, 2015 at 11:17 AM

    She is lovely. My thoughts and prayers are with you for the healing of this beautiful little princess!

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  32. Joanne T FergusonAugust 17, 2015 at 12:16 PM

    What an adorable little girl with a contagions smile! I do hope she gets better and had never heard of Lissencephaly before either!

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  33. UnknownAugust 17, 2015 at 12:52 PM

    I've never heard of that condition before but thank you for sharing your nieces story. What a great fundraiser - I hope it goes well!

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  34. Ron LeybaAugust 17, 2015 at 5:24 PM

    What an awesome way to help Violet. Will share this even so more people can see this,

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  35. NikkiAugust 17, 2015 at 6:41 PM

    She looks healthy now, and she's pretty. This is my first time to heard about Lissencephaly.

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  36. Aduke SchulistAugust 18, 2015 at 9:14 AM

    She is adorable. I have heard of this condition before, but can't really place where I heard of it from.

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  37. Yona WilliamsAugust 18, 2015 at 12:04 PM

    Violet definitely has a contagious smile! It warms my heart that she has and continues to defy the odds.

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  38. stephanicketyAugust 18, 2015 at 12:44 PM

    I've never heard of this before, and it was very interesting to learn. What a great event to raise money for your great niece.

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  39. Amanda TempelAugust 24, 2015 at 10:33 AM

    I had not heard of it before, but I am glad I have now. It's great to raise awareness. I'll share your campaign, and keep her in my thoughts. Such a beautiful little smile!

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  40. UnknownAugust 25, 2015 at 10:59 PM

    What a beautiful little girl! And you are an awesome Aunt to bring awareness to this condition. Thank you for this post.

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