“It´s going to be very important for AHC families around the world to document what happens to their child, when and how”
Tom, Kristine and Jacqueline were interviewed by AHCIM in July 2014
“its like having a child that has one foot planted at age 4 and the other at age 13 and you never know which one you will be dealing with”
Dr. Jan Koenderink was interviewed by AHCIM in August 2014
“Within the AHC we have a unique community, coming together with parents, patients, researchers not only medical researchers but also basic science researchers and we are all in the same conference and we should apply together for grants and also try to convince people to donate for better research”
Bill Krenn, father of Emory, was interviewed by AHCIM in September 2015
“When you are one in a million it feels really lonely”
Joshua Marszalek, father of Kathryn was interviewed by AHCIM in July 2014
“We went through a period of mourning because family plans and goals are rewritten when you have an AHC child”
Dominique Poncelin is father of Patrik was interviewed by AHCIM in August 2014
“Patrik has very severe seizures and has to be put in an artificial coma for 8-20 days two times a year on average”
Filippo Franchini, father of Lorenzo, was interviewed by AHCIM in August 2014
“Lorenzo´s first Christmas was at the intensive care at the hospital”
Landis Pino, Mother of Madison and Marley, was interviewed by the AHCIM in October 2014
Landis has TWO children affected by AHC which is extremely rare.
When the interview was done she did not have the confirmation that her youngest daughter was affected.
Professor Helen Cross was interviewed by AHCIM in London, May 2015
“If we find a treatment for AHC it may well help other disorders”
“the children who now are negative for mutation in ATP1A3 may teach us even more then those that are positive”
Meg Krenn, mother of Emory, was interviewed by AHCIM in August 2015
Meg and Bill Krenn have 4 children together which is not common among AHC families.
They have a very positive outlook on life.
Meg tells us about their life with AHC and that they will never lose hope