The Opposite Of Advocacy…

Jessica, I saw your public statement in the support group.


As you know, I was the person who arranged for you to speak at the international congress I hosted in Toronto. We had a very full day at the conference, and your bus was late. You eventually arrived and I felt bad that you did not have a chance to do your reading, so I allowed you to read the excerpt from your book (essentially an autobiographical account) at the gala dinner. Most people were moved by your reading.


Jessica, Jax has many years ahead of him where he will NEED medical professionals. To say he will probably die early is not necessarily true – my mother lived to 65. Others with RDEB live to their 30s and even 40s – like Bruce Gunn. Plus, I understand he had a stem cell transplant so he has that going for him. He will need every good thing going for him as time goes on, ESPECIALLY considering the charges against his mother.


You reached out to me asking for $$$ for travel funds to go to Cincinnati. I explained I could not help you, and now I see your post which is unfortunately NOT accurate in a few areas. Please remove it until you can correct it to be accurate.


You read the book excerpt before people who attended the gala, you did not “speak” before doctors from 25 countries. If you make such a statement it ought to be accurate.


In fact, only a few doctors were at the gala, and I got a LOT of grief from all of them but one, for allowing you to read the excerpt from your book. In fact, one doctor who was there wrote a letter to DEBRA Canada essentially demanding my head on a platter, he was so offended by the reading. I learned (the hard way) from that experience that one has to tread lightly if you intend to continue – as I do – working with them. That doctor is still AT Cincinnati.


I do not think it will help the Valiks for you to get involved. Your children had a different kind of EB. The Valiks need to be friendly with the hospitals and medical professionals – for Jax. Being allied with you could hurt them. I don’t say this to hurt your feelings, at ALL… but it could be very impactful, who David allies with. Is there another way you could show support, behind the scenes?


As host of the conference, and as a regional ambassador for DEBRA International EB Without Borders, I have to be careful about statements involving me.


But most importantly – I know you would never knowingly hurt Jax or his Mom. This court thing will require careful thinking in order to have the best possible outcome – Jessica home with her son. I have shared my thoughts with David and with Jessica’s lawyers through him, about creating reasonable doubt. That is critical.


Please give all of this some thought. The Valiks cannot afford to make enemies in the hospital system, especially now. Or even medical professionals thinking unkind thoughts.


Thanks, Jessica. I really hope you get where I’m coming from.

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