People on this site helped me understand my son’s disease and get him the surgery he needed to be healed and live a normal life. I owe the people I met on this site (and Ben’s Friends) my EVERYTHING. My son agreed to share his story and it was published in an eBook in 2017. Due to numerous requests, I took the time and expense to make it available in paperback. You can pre-order now on Amazon or Barnes and Noble or you can order directly from my website and have it delivered now. His entire case was documented including the years of research I did. He had bilateral ES and we had no support from the medical community. He was the first surgical case of a child that I am aware of. His regrew and there was disbelief. My son’s story is validation for you, your family members and provides a rare view from the patient and his family for medical providers. Here are the links:
https://www.barnesandnoble.com/w/connecting-the-dots-sherri-jonas/1135296998?ean=9780997964325
I hope that everyone finds answers and peace. Love to you all!
Sherri (for those who were on here many, many years ago, I was earmom)
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I bought & read the paperback version of this book & can’t recommend it highly enough!