Hi,
Just logged in and saying Hello. I am Sean"s Mum. If anyone has any tips,opinions, or news,please email me.
Also, I can share any tips I have on diet, doctors, and hope.
Best to all.
Sincerely,
Mary Mc
Mary,
I can't even begin to organize all the questions that I have for you. You have years, and years of experience. We have only been using the diet for just shy of a year. I don't even know what ornithine numbers we should be happy with.
Right now it's hard to keep my sixteen year old son feeling full. It's a little hard to adjust from full flavored food to low protein cheese and such.
Your experience would be a gift to us parents who have no one who has traveled the path before us. Missy, Trina, and I compare between ourselves, but we are all just a year or so into this. Our doctors can't tell us that they've treated someone else successfully.
Thanks for posting on this site.
Jen
Thanks for your time.
Hello Again Jen,
Missy & Trina,
I just ran out of space. So much to say and share. If there is anything myself
or husband can do or answer, please email us at mary4mcg@gmail.com- we
could give our phone number.
We wish you all the best. Sean was luckly to have found this website. He is a wonderful son and i know will share anything he can.
I know Sean's Doctors see patients from all over the country and world. If you want their numbers, let us know.
Best of luck, are thoughts are with you.
Sincerely,
Bob & Mary
Hi Jen and Family
I think it may have been your husband that gave me a donation for a fundrasier, I am doing, for Sean's Doctor Elliot Berson. I wanted to send you a sincere thank you. Doctor Berson, has genuine concern, and wants to keep GA in the spotlight for any developments, new treatments or advances. Hopefully someday we will have a cure.Best of luck to and your family.
Sincere thanks,
Bob M