Chinese version (English version below)
哈囉，我是來自台灣的魏小姐-Patty，我的雙胞胎小兒子，有魚鱗癬，是屬於EI KRT1+PPK。
擁有一個EI的小孩，對我們的家庭跟生活帶來了巨大的變化，包括痛苦、絕望、當然也有開心跟滿足。我們每天的日常，就是與孩子奮鬥身上的皮屑，沾黏的毛髮，當然還有無止盡的水泡跟傷口。我相信所有EI的父母都有一樣的心情，但也有強壯無比的心來做孩子最堅強的後盾。
然而，儘管父母親非常堅強，但對於 EI的孩子來說，依舊有許多未知的狀況會發生。所以，長期而言，如果要幫助我們的孩子生活品質得到更佳的改善，我們需要像EI cure project的存在，透過這個平台，家長可以在上面做分享，有解決問題的方法，對其他的EI小孩來說，也相當的受用。
當我在一開始知道我的小孩是EI時，我非常幸運地可以遇到Helen小姐，因為他無私地提供建議跟方法，讓我的孩子可以免去在醫院過多的折磨時光。
現在我的寶寶已經兩歲三個月了，我很驕傲的像你們介紹他，他是Louie。
我們一起為EI的家庭努力，創造更棒的未來吧!
English version
Hello, I am Patty Wei, and I represent Taiwan. One of my twin boys, the little one, has KRT1 EI with PPK.
Having a child with EI has brought huge changes to our lives including sadness and desperation, and then happiness and joy. All the tough things associated with EI are now just part of our DAILY LIFE, but I believe that all parents with children affected with EI struggle emotionally at times, and yet all parents are strong enough to be the best support and do the best that they can to help their children to live their best lives.
But somehow, even though we parents are strong enough to support our children every day, there are still various difficulties that may happen for our children because of their skin. In order to improve our kids' quality of life in the future and for the long term, having a professional organisation like the EI Cure Project will be very helpful to all those affected with EI. People can share their different experiences and solutions to the daily challenges, and being able to share what works for one child can be REALLY HELPFUL for other families.
When I knew my little one had EI, I was so lucky to get to know Helen Lill. She gave so many solutions and suggestions to us, and I should say because of her helpful advice, my baby boy Louie stopped suffering in the hospital, and became well enough to start his young life with us at home.
Now my baby boy is 2 years and 3 months old, and I am proud to share his beautiful face with all of you.
Let's bring EI families to a better life together.