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.