End of my ads! LOL I am distracting myself from the fact that Jareds annual Run is tomorrow. This marks yet another year with out a treatment yet so many people are still supporting him and our cause. It is a bitter sweet moment each of our Fundraisers because I pray for the day I can say We have a Treatment. We are close and are a part of a few different studies . Since our DX 8 years ago we have made some big strides along with all of the Sanfilippo families. This year Jared is turning 10 . Not a great age as far as Life expectancy But I have Hope and will continue to try to keep Jared stable and as healthy and happy as possible. As a Mom who Is a performer I Love to give back to many charities and donate my talents to numerous fundraisers. But being the MOM and family it is for is Very HARD for ME. Please know no matter how distant I may seem I am very great full for all of the Prayers and support. I love My son with all my being. This disease is horrible but I refuse to Hide from it so tomorrow I will be there with bells on along side my Family and Jared fighting the Fight!!
Posted on: Sat, 13 Sep 2014 21:51:38 +0000
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