Jacquelyn MacKinnon said:July 10, 2012 11:34 am PST
April and family... thank you for passing this along! You guys are truly an inspiration and that John Thomas is a fighter for sure! We are looking forward to the boys becoming friends! The MacKinnon Family
DOREEN S PATNODE said:June 1, 2012 9:30 pm PST
I have heard that GOD never gives us what we can't handle. Not only have you embraced "Holland" you have realized that you have been given a gift- The ability to smell the roses, laugh with your son, and educate all around you near & far with your website of the ability to see a person before you see the disabilities one might have. And that is a great gift to your son and to your family. I understand there is struggle- but you continue to fight for John Thomas. You & your Husband are very special people. I wish only the best for all of you & respect your battle with Love....... And gentle hugs with a smile for you John Thomas
Tessa said:April 2, 2012 4:21 am PST
I'm a 20year old student nurse from Belgium and I have to say thanks a lot for this site! Last week I had to take care of a little kid with Toriello - Carey syndrome in a childrens hospital for school. Becaus I have to do an assignment on it as wel I started looking for information, but that is something that is apparently very hard to find! This site already helped me a lot!
I've also red the poem you've put on this site about itally and holland, and I think is very lovely and beautifuly put!
I wish you al the best luck in the world with your beautiful little boy. I hope you can have many more years with him.
Kind regards, Tessa
(I'm sorry iff there are a lot of mistakes or wrong spelled words, I'm not that good in writing in English)
Dr. David Tegay said:January 3, 2012 1:28 pm PST
As one of the principal investigators on the largest genetic research study into Toriello-Carey syndrome I want to thank you for your efforts to raise awareness of this condition and improve care for all individuals living with Toriello-Carey syndrome. I want you to know that I have just been solicited by NORD for suggestions on conditions to add to the Compassionate Allowances List of the Social Security Administration and I am lobbying for Toriello-Carey syndrome to be included on that list. Kind regards, Dr. T
Alain said:December 20, 2011 9:16 am PST
I enjoyed your website. I have an 18 year old daughter with Toriello Carey Sydrome.
THANK YOU FOR YOUR KIND WORDS AND SUPPORT. LOVE, JOHN THOMAS