HOW AWESOME IS THIS?!?!?

HOW AWESOME IS THIS?!?!?

 

 

I am part of a group on facebook with other CDH-1 mutation carriers.  A gentleman by the name of Isaia Piho posted an amazing update that I just HAVE to share with you!!!  He, too, has had a total gastrectomy.  I am not attaching the pictures he posted and speaks of and as you read and as you read this, his daughter looks to be about 3 or 4 years old. (my daughter is almost 5 years old and has a 50% chance of this mutation...this gives me SO much hope!)

 

 

"Kia Ora everyone. Just thought as it's coming into the Christmas season that I would take the time to introduce you to an amazing man and a good friend - Professor Parry Guilford (tall man on the right - I'm just shy of 6'2). Parry is what you would call the world's leading expert on CDH1 mutations (in fact he discovered them). We are lucky here in Dunedin to have him and his team based here so we catch up with them regularly.

Parry keeps a picture of my daughter on his door as a reminder of a timeline promise they have given us. That is to have alternative to TG by time Tiare-Joy is at the age she is due to be tested. Every 6 months we give them a new picture of our beautiful daughter for inspiration to him and his team. Truth be told is he and his team are inspirational to me.
Unfortunately our generation are too old for alternative therapies yet, however our visit last week to the university laboratory had Parry and his team revealing their latest breakthrough with us. They have successfully grown miniature stomachs which will allow them to "field test" medication all within the lab. It is early days for human clinical trials but it's hopeful news for our future generations. It may not sound like much but there is some genuine excitement here in the deep south
So from me and my family I wish you all a Merry Christmas and remember to stay positive and continue to support one another
Isaia"