I’ve spent a small fortune gaining access to as many different medical journals as I could. None of them have done me much good except to let me know there’s not a lot of information out there. So, I’m trying to put together as much information as I can on chromosome 6 deletion kids and what issues are affecting them.
How You Can Participate
I’m attaching an excel file to the left that includes Katy’s information along with every issue I’ve found facing kids with 6del at this time. If you would like to include your child’s information (as much or as little as you like), please simply download the file, check whichever boxes apply to you and then e-mail the file back to me at “todd (at) hope4katy.com” . Please let me know if there is a symptom or issue not included that you would like added and I will take care of it.
All of us who have received this diagnosis have been told some variation of “This is an extremely rare case and there is not much information available.” At least this feels like a start to me.
Thanks for participating.