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This fundraiser ended on 08/01/12

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People who love Laila are raising money to help with expenses related to her diagnosis of Vanishing White Disease.

The family and friends of little Laila Gracie is uniting to raise money to help cover medical and other expenses related to her diagnosis of Vanishing White Matter Disease (VWM) a form of Leukodystrophy. More information about this disease can been found at

In July 2011 my 4 year old niece, Laila Gracie was diagnosed with a rare genetic disease called Leukodystrophy- Vanishing White Matter Disease (VWM). There is no cure for VWM and it is a progressive, degenerative disease that is terminal. As the disease progresses, Laila is going to require more medical equipment and physical therapy to help her continue to be as ambulatory as possible.

Laila is a beautiful, loving, energetic 4 year old who loves Disney Princesses and Justin Bieber. She has this amazing smile that is infectious and lights up any room she is in! This little girl is also quite the jokester and loves to make everyone around her laugh and her laugh is the best, most heartfelt laugh you will ever hear!

Imagine trying to keep a 4 year old from bumping their head or getting a fever because it literally could be a matter of life and death, impossible right? However, this is the new reality for my sister, Alexis and her husband, Matt. This diagnosis came as a complete shock to everyone in our family. When Laila was born, we all fell in love with her from the moment we met her. She was a healthy, happy and a very active baby. However, this disease is something that isn’t detected in any current pregnancy screenings or baby check ups and usually appears initially in the way a child walks. Laila was a late walker and always walked a little pigeon toed but the doctors assured my sister for years that this was normal and that Laila would eventually grow out of it. Being a mother, you know when something isn’t right with your child so my sister kept on her pediatrician to figure out what was going on. After a second opinion the doctors started testing and that’s when they discovered the large amounts of brain damage (hence, the term vanishing white matter disease). Laila is having increasing difficulty walking and falls often due to her poor balance. My sister and her husband constantly worry and they try their best to keep Laila from suffering any head injury or fever because either can progress her disease fatally in a very short time period. All they can do is make everyday count for her and cherish every moment we have her on Earth.

To add insult to injury, my sister’s husband, Matt was diagnosed with testicular cancer in March 2011, 4 months before Laila’s diagnosis. Matt missed work due to his cancer and treatments. This, compounded with the fact that there has been less work for him due to California’s current economic condition, has dramatically decreased their income. The medical bills and missed work have put a huge strain on my sister’s family. Meantime, my sister also needs surgery and physical therapy for a torn ACL but keeps putting it off because she can’t afford anymore medical bills. I sometimes wonder how much more my sister can take. She has been incredibly strong through all of this but even the strongest people can only take so much. This is an unbelievably difficult situation they are in and I am hoping that through this fundraiser, we can help alleviate some of the financial burden.
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