Well, we have had a lot of new traffic coming to my blog from our new friends on FaceBook via the
Netherton's Syndrome Research Group
And we say WELCOME! It really is comforting to meet all of you out there who are going through the same thing as us. I am truly inspired by this lady Carly Findlay who has Netherton's and has not let it dictate how she wants to live her life. She looks happy, and outgoing, and most of all she is not afraid to be herself no matter what anyone else thinks! Check her out!
Also the story of an adorable little boy named Jack really hits home for us. So many things that he and his parents are going through are all too familiar. They are doing an amazing job raising awareness in their country and fund-raising money for Netherton's Syndrome Research. I really admire their positive approach to their situation. They have done interviews, newspaper articles, etc. and have really gotten the word out there about Netherton's. They have set up a website: Netherton's Syndrome so go check it out too!
Anyways- thanks for visiting! And there are links to my specific posts about EmmaLee and Netherton's Syndrome in my side bar under my profile and pics.
Or- Everything related to EmmaLee, including pictures here:
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1 comment:
So glad you can connect with other people who understand the pressure you are under. Somehow it just makes the struggle a little easier to know that someone else can comprehend exactly how you feel and have had the same feelings as you.
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