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$1,115 of $7,000
16%
33 donations

This fundraiser ended on 09/30/11

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Fighting for all children who suffer from Leukodystrophy. It's a disease that people need to be made more aware of.

Please take the opportunity to read this inspiring story,one that makes a person want to do something special. This family is TRULY amazing.

This is a story of a family that has endured, overcome and conquered several different life altering experiences. Janessy and Ruben DeLeon have not one but two children who suffer from Leukodystrophy. They have yet to be diagnosed with a specific form of the disease that encompasses an array of disorders that affect white matter in the brain.
Gabriella, their first child born 9 years ago, is a child that expresses her fears, anxieties, her joy and her love through facial expressions. She is low tone, and has limited control of her limbs. At the age of 2 Gabby developed a severe case of pneumonia which resulted in her being placed on a ventilator. She remains on the ventilator to this day. She is loved and cared for by anyone that has had the opportunity to meet her.
Nicholas, their second born who is now 6 is affected as well. He functions slightly higher that his sister. He is able to sit, army crawl, and pull himself to his knees. He too is a very happy child who loves kisses and hugs from his Mommy and anyone who is willing to give them. He likes everyones attention to be on him.
While pregnant with Nicky, mom developed thyroid cancer. When he was born she immediately was admitted back in to the hospital where she had her thyroid removed and began chemotherapy. She was unable to hold her baby boy for several months due to the radioactive chemo.
Mom gave up her career in Manhattan to stay home and make sure that her children were properly tended to and to obtain knowledge and remain current on their disease. Dad unfortunately had to go on disability due to years of strain on his back from the type of work he did and from lifting his children who by no fault of their own are like lifting "dead weight" due to low muscle tone.
Not only have Mom and Dad overcome the challenge of having 2 handicapped children, their relationship has remained a positive one, and they are closer and stronger because of it. The divorce rate for a married couple with ONE child with a disability is 80-85%.
The DeLeon family is very special to me. They have 24 hour nursing care in which I have had the opportunity to care for both Gabby and Nicky. My goal is to raise funds to help off-set the financial burden they have endured due to no income. The money collected would also aid them in maintaining the proper equipment needed as the children grow. So PLEASE, make a donation and help spread the word about this forgotten disease. 10% of all donations will go to the United Leukodystrophy Foundation. Check out their site as well, you'll find a link on this page.
Thank you so much for your generosity!
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