Our prayers are with you - Mieneke Scheffe-Stevens Best family and friends, with a broken heart, we want to let you know, that last Monday at our youngest son Jasper Valentine Seitelbergers disease (infantile neuroaxonale dystrophy) has been fixed. After a year of investigations and uncertainty, is this incurable disease an incredibly severe blow to our family. As a parent you have dreams and expectations for a normal future for your children. It now appears that, this is not for Jasper, is extremely bitter and difficult for us to comprehend. Our merry little angel who never has someone harm done, will fall back in the coming years and left us. Despite the many incredible grief and pain to this heavy fate what has affected us. We will attempt to get the time which we, along with our other kids great memories for the future. Despite that there is still no drug or treatment method for the disease of Seitelberger, and we stand for the toughest potential challenge as human beings, we cannot stand by and watch while our son. Having regard to the a very rare metabolic disorder (1 on the million children) there is very little known. We would like to ask you to share this post in your area, there are people with experience or specific knowledge then let them contact us. In recent days, we have had much consolation to the love, support of our close family and friends. We are very grateful for this support. We can only hope to still our dear son s/little brother so long to enjoy. Raymond & Nadine, Lucas, Floris & Jasper
Posted on: Mon, 30 Jun 2014 11:03:40 +0000
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