Sunday, August 9, 2015

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

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

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  9. This campaign should be spread. This deserves my share!

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

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  11. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Adorable youngster. Never knew about this illness.

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

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

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

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

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  38. 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. 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. 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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